(Me) Apparently, I Can Be Non-Verbal. (Them) NO, YOU’RE NOT, YOU FAKER!

October 23, 2009. Leaf on a window. Photo by me.

I recently posted a six-part series of TikTok videos after getting lost down the rabbit hole of the “non-verbal” in ASD. I wasn’t searching for anything specific to “non-verbal.” In fact, my search began with “Is being able to write more succinctly than speaking an autistic trait?” And it went from there.

Now, here is the problem with TikTok: It requires me to be verbal, which means I may be taken wrong (because that NEVER happens to an autistic person, am I right?), and it means I may not share the info in my head accurately out of my mouth, and it also means that some people will take a single sound-bite and make a judgment call against me.

Before I dive into why I believe I am “non-verbal” (I’ll get into the use of the quotes later) and the related links, I want to make an observation. The people that watched all or most of my videos (and you can see the little watch icons scroll up the screen) tend to be the ones that also heart the videos or respond to me with heartwarming comments. The ones that DON’T watch all the videos are the ones that take a single thing that for whatever reason angers or frustrates them and replies about it in a bit of a judgy way (or a lot of a judgy way).

Okay, onto the article, which will start with a disclaimer that I’m going to put very large in a quote format so hopefully no one misses it:

I KNOW GOOGLE SOURCES CAN BE IFFY. I KNOW RESEARCH CAN BE DONE IMPROPERLY. I KNOW ANECDOTAL SOURCES ARE JUST THAT, ANECDOTAL. AND I KNOW THAT “NON-VERBAL” IS A TROUBLESOME TERM AND THERE NEEDS TO BE A BETTER ONE.

As I stated above, my Google search began with “Is being able to write more succinctly than speaking an autistic trait?” One of the first sites I came across that sparked my interest was a study titled, “Comparing the writing skills of autistic and nonautistic university students: A collaboration with autistic university students.” Unfortunately, as with so many research papers, the full text was behind a paywall, so I only had the abstract to review, but this line is where I first saw the term “nonverbal.”

Autistic students in our study had higher nonverbal intelligence than nonautistic students.

Now, obviously, this is not being used in the same way one would when referring to, say, an autistic child who literally cannot or will not speak. But it did get me thinking, “If I have higher nonverbal intelligence, does that then mean I have lower verbal intelligence?” And deeper into the rabbit hole I delved (but not before reading these two lovely accounts regarding autism and writing here and here).

My next search, “autism nonverbal vs verbal communication” popped up this:

Fascinating. I didn’t speak until I was around 3 or 4 and my first word was “horse.” When I was 9, the brownie instructions said “Stir by hand,” so I asked my aunt what it meant: “Stir by hand, duh.” And I dunked my hand in and stirred — to her utter horror. I remember the first time someone said “Beat a dead horse” when I was little and I cried for the horse. Eye contact is and always has been painful for me. Let’s read some more… so I clicked the link to the NIH site.

The entire page was filled with fascinating information that gave me a wealth of other information to mine my memories and the Internet for. But this was my favorite in regard to my current search:

The ability of children with ASD to communicate and use language depends on their intellectual and social development. Some children with ASD may not be able to communicate using speech or language, and some may have very limited speaking skills. Others may have rich vocabularies and be able to talk about specific subjects in great detail.

Oh! So that means even language development is on a spectrum. And where did that lead me? Back to the search results to see what else that search produced. Well, the very next result was “Nonspeaking Autism (Nonverbal Autism): Symptoms & More” at the Healthline.com site.

My brain’s IMMEDIATE query? Whoa? Who is that and are they credible? (Because regardless of what some TikTok responses might lead you to believe, I actually DO know how to research.) So my next check for ANY website I’m unsure of is to head on over to Media Bias / Fact Check and check the site out.

Great! So I can read the article now, and back I go to it, which, once you click on the link, you find it’s been renamed to “Understanding Nonspeaking Autism.”

Now remember, I started with just trying to find out if writing better than speaking was an autistic thing, and within only a few short steps, I end up with a full-fledged “nonspeaking” article. Let’s move on…

As I began reading the article, I realized quickly that this wasn’t me, but the Google result had two sentences in it that are what piqued my interest in the first place:

You may also see it described as nonverbal autism. However, the term nonverbal isn’t completely accurate, since it means “without words.”

So where was that in the article? What was the context? What else did it have to say to me? Apraxia? I clicked the provided link and found that, no, this did not apply. Echolalia? I clicked the provided link and lose my mind. EVERYTHING! ALL OF IT!

Where are we headed? Off to Google! autism echolalia adults

The results, though, are now heading into the realm of ASD and ADHD coaching, and personal blogs, but we do get the NIH again, a Missouri State research paper, various ASD organizations, and VeryWellHealth (which I had to look up on Media Bias / Fact Check and returned similar results to Healthline).

I read so many, and I think Echolalia will need an article all its own. But we need to get back to where that led me in the bunny warren:

Wait. I keep seeing the term “non-verbal” or “nonverbal” in these articles. Some uses I get (such as literally not verbal communication, like gestures) but some I don’t.

In my quest for knowledge, my next search was specific. I personally KNOW non-verbal/non-speaking ASD children. I’m not them. So I wanted results related to ME. Hey, Google, what do you have for “How does non-verbal present in adults with autism?”

The search didn’t start out very promising. The articles led back to children or even “nonspeaking.” So I tried again with “Autistic, adults, non-verbal -child” and started rummaging through those results.

This is where I realized that actual SCIENTIFIC research or even a wider understanding of adults with autism is seriously lacking. Once I excluded “child” from the search, basically all I was left with were anecdotal stories.

And because I’m not an academic elitist, I know that anecdotal stories can be important, ESPECIALLY for late-diagnosed (self or formal) adults. When there is little to no research on your peer group, the individual stories are all you have left to try to find answers and community.

So I read through many lovely blogs and posts: Kerry Magro, National Autistic Society Forums, The Autlaw, and The Autistic Self Advocacy Network, to name a few.

And that’s when I decided to create a series of Tiktoks explaining how I go “non-verbal.” (Note: I say “go” non-verbal because some instances are more obvious than others, but 100% of the time my verbal communication is lacking compared to my written communication.) Because there isn’t information out there for our peer group, so all we have for now is each other.

My videos were meant to provide information into who I am, not to “define non-verbal for all autistics.” In fact, if you make it to Part 6, you are “rewarded” with verbal bullet points of the previous five videos and how they relate to people interacting with me. It gives you HUGE insight into who I am as a person.

So it’s disheartening when some people think I’m stealing a phrase, when my videos made clear I had a problem with the phrase in the first place. In fact, I also found during my rabbit hole tour, that there is a thing called the NVLD Project at Columbia that is working towards getting Non-Verbal Learning Disability into the DSM. From their page:

Further, because there is no standard definition, research groups vary in the definitions they use for NVLD, making it difficult to compare results between research studies. Consistency in criteria is important in moving the field forward by improving identification and designing and testing interventions.

There needs to be a standard definition, that way the term isn’t misused. But this also means that people who use it as I do aren’t “appropriating” something from the non-speaking folks. We are simply using the only language we have until someone else can determine a better term.

If had NEVER heard the word “zebra” before and I see it on TV and call it a striped horse, I’m not stealing anything from the horse community. I’m just trying to be descriptive in the only way I know. Give me the correct word. I’ll use it. Until then, give me grace as I’m learning more about me.

And if you think about it, while non-verbal can be problematic in ASD usage since it’s used in varying ways, at its core, it’s a fairly descriptive phrase: not verbal, such as not involving or using words (Merriam-Webster). Our pets communicate with us non-verbally. If someone does something nice and I smile, I’ve just communicated non-verbally. So getting your knickers bunched over such a basic, yet useful term seems like a big waste of energy.

And please, as a favor to me, keep in mind that I wasn’t diagnosed as a child. I wasn’t surrounded by supportive parents and doctors and communities. I was “weird” and “strange” and “odd” and “what is wrong with you?” I spent my childhood being bullied by my own family. I spent five decades second-guessing myself. Three marriages imploded because I didn’t have the words of who I was and I thought I could “fix” my perceived faults when it was actually autism.

I have had to traverse landmine-laden hellscapes kids with support systems may never have to tread, so treat me as you would like to be treated instead of adding to my five decades of trauma.

And, most of all, be kind. My diagnosis is only about two months old if that. I’m still new to this which is WHY I’m actively learning and which is WHY I’m putting myself out there. I’m trying to find my people, my community, my answers, not further trauma.

And for reference, here is my TikTok account where you can find all of the referenced TikToks.

Thank you for coming to my TedTalk.