JUL 20, 2021

Who [Not What] Is In a Name

Sticks and stones may break my bones, but continued disrespect hurts a lot worse as time goes on.

That’s why, in keeping with our July theme of “Identity,” there is no better place to start but with the “self.” Namely, (pun intended) the language we use to discuss individuals who have been diagnosed with Autism Spectrum Disorder (ASD).

In this article we will break down the ongoing dialogue surrounding the two main descriptors preferred by self-advocates and caretakers:

  1. Person With Autism
  2. Autistic Person

From a grammatical perspective the difference is between making Autism a noun or an adjective. However, this isn’t just about words. It’s about the true impact that they have on a person’s mental and emotional health.

At its core this is a conversation about self-advocates’ establishment of autonomy and caretakers’ commitment to awareness. Unfortunately, because the advocacy community is split between the two there is no definitive answer. Instead, there are preferences.

That’s because the one thing that the two intellectual camps can agree on is their shared goal to increase the understanding and respect in the world.

All in the hopes of abolishing harmful stigmas.

Why is there a rift?
In short, the socially constructed connotations of “autism” are the problem, not the word itself.

The developmental disability we know today as Autism was given its name in 1908 and the legacy of treating those diagnosed with it as “lesser than” has haunted it ever since.

Much of this comes out of the discoveries of and reactions to there being a whole spectrum of ASD.That’s why our other July 2021 article is on understanding the spectrum of low to high functioning Autism. You can check that out by clicking here.

Much of the stigma stems from societal expectations about people with different levels of ability to:

  1. Care for themselves.
  2. Participate in normative society

It is understandable then, that the first concern of self-advocates, caretakers, and their allies is that people on the spectrum are treated with respect. Our connotations, perceptions, and stereotypes of someone’s identity often begin with the words used to describe them.

That’s why the crux of these ongoing dialogues is about deciding what the “correct terminology” is for those on the spectrum.

We are sure that if you’re reading this article, you don’t have to be told twice that, calling someone the perceived “correct” term but still treating them according to stereotypes is performative, rather than progressive.

In short, we here at Intercare believe that how you address and discuss the individuals in your life with an Autism diagnosis is up to them.

That’s because at the end of the day, their comfort level and how they feel best about themselves is what matters.

To summarize the two camps believe that:

  1. Focusing on the noun “Autism” separates the individual from the stigma of their diagnosis
  2. Focusing on the adjective “autistic” accepts the Autistic individual for the whole of who they are

Even though they are different approaches, both have the ultimate goal of ensuring that those on the spectrum are appreciated and respected.

Person First Language - Person With Autism

The push to use “person first language” comes from feelings of unease with being labeled. Self-advocates in this camp are commonly afraid of being put in a corner worse than Baby from “Dirty Dancing.”

In Baby’s situation, she is literally belittled by everything from her name to how her family treat her as if she can’t make decisions for herself.

That (times a million) is why many advocates point towards this terminology. They believe that by putting “person” before “autism” that that’s how they will be seen. They want to separate themselves or their family member(s) from their own memories of when mental health disorders and disabilities were treated inhumanely.

With background and empathy, this perspective is completely understandable. While the ADS community will never be completely free of its past, those who prefer “person first language” hope to rebel against a system that willfully misunderstood them for decades.

Adjective First Language - Autistic Person

Recognition. Affirmation. Validation

Those are the words that self-advocates like Chris Bonello and Lydia Brown attribute to being called “autistic.”

While that may sound similar to the goal of “individual first language,” people who ascribe to this use of language believe in addressing the bigotry rather than separating from it. In a way, the main difference is how the groups address society’s expectation that anyone on the spectrum should feel ashamed of their diagnosis.

They see the thought of separating oneself from one’s Autism as both impossible and hurtful. This comes from the foundational belief that there is nothing wrong with being autistic.

In this regard, Lydia’s words speak best for themselves. She writes that in accepting oneself as autistic, “we recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic.”

Don’t just take our words for it. Check out #ActuallyAutistic content creators and advocates that spend hours cultivating communities of awareness.

Conclusion
Communities rarely come to consensus about much. The consensus that Intercare and the global network of Autism Awareness groups has reached is that words matter.

Let’s be blunt. Infighting about which terminology is more “correct” only allows the continuation of bullying and harassment from outside of the autistic community. It is our job as educators, health professionals, self-advocates, care takers, and allies to address the ubiquity of using insensitive terms when addressing those in the autism community.

When we let semantics matter more than actively listening to peoples’ lived experiences, a line has been crossed. That’s because when we care more about a person’s label or diagnosis instead of their hobbies, interests, and personality it is then that we have truly erred.

At the end of the day, it needs to be about who is in the name instead of what that name is.