We need to decide, are we going to continue to spend time debating semantics, or are we going to fight with a unified message?
By Carly Fulgham
My autism diagnosis didn’t enlighten my life until age 28, but of course the signs were always there when it came to the exchange of thoughts, feelings and ideas. I tried acting classes to alleviate miscommunication, but I had no idea for much of my life that there was a reason why communicating was so rife with upset and confusion for me. Thus was born my obsession with words. Semantics, alliteration, puns, idioms, metaphors–I couldn’t get enough. When I discovered journalism during high school yearbook class, something struck a chord. Eventually I declared a journalism major at the University of Iowa, officially with a concentration in business, but unofficially a concentration in words. I became obsessed with the meanings of words. I think, in part, because I found the world around me so baffling. I scoured the course catalog and enrolled in every class that I could find that dealt with words, in departments from English to Linguistics. Grammar, diction, history of language, I took them all. I think that subconsciously I knew that I was missing something, and I craved understanding.
Now that I’ve entered the world of self-advocacy and autism-related non-profit work, I see yet another facet to words. There are some that we all agree are hurtful and have negative connotations, like “the R-word”. But there are others that are controversial such as “person with autism” vs. “autistic” or how to describe someone who does not communicate by the same methods as their neurotypical peers. I, and others, struggle sometimes to find the right word so as to not offend, but I recently realized it doesn’t have to be that complicated.
The two pieces of the puzzle (pun intended) that we’re missing are intent and definition. We need to step away from implication. When you assume that a word implies something, you’re doing so from your perspective, but in our neurotribe that is known for taking things literally, perhaps we need to be just that, literal. Don’t demonize a word that has never been used as an insult.
Definitions matter. This is part of why we say “mute” and not “dumb” to describe someone who cannot speak since dumb has a definition that is negative. When we lose sight of definitions, language becomes repetitive and loses some of the flavor and nuances that make poetry and prose beautiful. As long as we’re staying true to the intent of the word, it’s time to re-open our advocacy community to the possibilities of language. There are words that are now clearly intended to be insults, usually regardless of inflection, so everyone can agree to avoid retard, loser, stupid, idiot, dumb, and others that have no neutral descriptive or proactive use. But we need to stop being overly sensitive to innocuous terms.
I have a friend who uses alternative communication methods such as RPM and typing. He has indicated that he prefers “non-speaking” to “non-verbal”. That is his preference, and I try to respect it because he can be a wonderful wordsmith and is on his way to being an amazing self-advocate. However that doesn’t make “non-verbal” bad. The first definition listed for “verbal” in the Merriam-Webster dictionary is “of, relating to or consisting of words” so in that respect he is verbal, but the third definition is “spoken rather than written”, so I in that respect he is not. And that’s OK.
Both terms are accurate, and for someone that doesn’t know my friend’s preference, but that wants to point out that lack of out-loud speech does not mean that he has nothing to share, non-verbal is a succinct and benign option. When tone and inflection are neutral, neither “non-speaking” nor “non-verbal” have a negative connotation. Both phrases reflect valid use of the English language. For variety, there are other terms that aptly describe his peers, including “typers”, people who “communicate differently”, and so on that can add to the richness of composition without detracting from the message.
One of the key lessons I remember from journalism school is to avoid using the same word over and over again in an article. In the book “Essentials of Practical Journalism”, author Vir Balance Aggarwal succinctly put it: “An elementary rule for writing is not to use the same word twice in a sentence, but substitute a synonym on the second usage. Journalists go a step farther to avoid repeating words or parts of the same words in a paragraph. This makes for less monotony and smoother reading.” When we throw away our thesaurus and restrict ourselves to one set of “approved” words, we limit our ability to communicate effectively with the educators, employers, and elected officials that we want to influence with our advocacy.
Person-first language is quite contentious in our community right now. People obsess over whether or not “autistic people” demeans the person or describes the person. Others focus on whether “person with autism” means that autism can be/should be severed from the person or that it means that a person has rights regardless of their neurodiversity status. I would like to submit a different perspective. They’re both ok. I use both depending on what I want to emphasize. If I want to point out that I need an accommodation because of my autism or that I can do something even if people think someone like us shouldn’t be able to, I say I am autistic. When I am pushing for equal treatment and equal rights, I am a person with autism. Nether phrase is inherently good or bad, right or wrong. They have different implications and it’s OK to use either when appropriate.
It’s all about semantics. Mean what you say and say what you mean. Use whichever is applicable to your situation, and don’t demean others for using a different word or phrase to honestly describe a situation. Another point to consider: when you say that a variation or use of the word autism is wrong, you are sending a subliminal message that there is something inherently wrong with autism. While some people wish they didn’t have it, others wouldn’t take a cure if one were offered. It is not for any of us to judge, there are too many other important issues that we, as a community should focus on. Until we have won equal rights and equal treatment, I’m saddened when I hear dissent over mere words. It is time we take a step back and decide what is most significant to champion that will impact us, and those who come after us for years to come, which words should be used or true quality of life issues?
I have heard time and time again that the autism community, to be blunt, needs to get its act together. There are many organizations but no clear directive or position. We need to decide, are we going to continue to spend time debating semantics, or are we going to fight with a unified message? In the coming months and years, we need to mobilize to ensure that the Department of Education supports the principles of the IDEA. We need to fight to keep state and local laws and regulations fair, such as fighting against the recently introduced law in Nebraska that would make restraints and seclusion legal in schools. We need to let our senators and representatives know what it means to us to have Social Security benefits and heath care when we’re not able to provide for ourselves. Those are the things that matter. Yes, we use words to fight for them, but it’s the stories we tell that matter, not tip-toeing around language. As long as you stay true to a definition and intent, the words should be flexible so that everyone can feel comfortable and empowered when they’re supporting, embracing, championing, backing, endorsing, reinforcing, delivering, assisting, aiding, and advancing neurodiversity.
Carly Fulgham is the Autism Society Ventura County’s first board president with an autism diagnosis. She is a founding member of the Autism Society of America’s Public Policy and Advocacy Committee and was appointed this summer to the Autism Society of America’s Panel of People on the Spectrum of Autism Advisors. Carly is a technology project lead for national bank and an active volunteer with a local autism organization. She is married to a neurotypical man and is an adult on the autism spectrum. Carly didn’t get her diagnosis until she was 28 years old and credits that moment with changing her life for the better.