The Untold Stories Of Nonspeaking (Nonverbal?) Autistics: Challenging Stereotypes & Assumptions

Why Nonverbal Autism Is Not The Most Accurate Terminology

In a society that links speech with intelligence and capability, it is time to challenge assumptions about those who are nonspeaking.

Iconic figures such as Stephen Hawking, Helen Keller, and Marlee Matlin are powerful reminders that communication transcends the boundaries of verbal expression.

Similarly, nonspeaking autistic individuals have a wealth of ideas, thoughts, and feelings, eager to be heard and understood.

We rarely hear the stories of nonspeaking autistic people. Until now...

With the life-changing breakthrough of text-based communication, where we take the pressure off of the fine-motor skill of speech, and provide access through the gross-motor skill of pointing to letters, we are finally learning directly from them.

Here are the top 3 myth-busters that nonspeaking autistic people are teaching us...

"Nonverbal" Autistic Myth-Buster #1:

Speech Is Not A Barometer For Intelligence

Since 1998, I believed appearances were reliable and responded to observed "behaviors" as truth. However, in 2015, meeting "the real Kaegan" transformed my perspective.

Kaegan was an 18-year-old student who appeared to love The Wiggles, watching them repeatedly and asking about them constantly. We’d answer, he’d smile—a cycle we mistook for enjoyment.

Using a handheld alphabet board with a trained communication partner, he finally expressed his distaste for The Wiggles, having outgrown them long ago. His apraxic body kept him repeating actions and words, despite wanting to express much more.

Apraxia: The inability to perform specific intentional actions.

Up to 65% of autistic people may exhibit signs of apraxia.

Once he had reliable communication, he expressed a desire to study psychology, history, and math.

Initially, his speech indicated a second-grade math level, but through spelling, they discovered he was far more advanced.... like high school and college level!

At this point, everything changed for me as I immersed myself in the world of text-based communication, eventually switching the focus of my career to help others access their inner voice.

And guess what - every single person I have met who has gained access to reliable communication, has proven that speech does not represent intelligence levels.

Andrew, 24, who recently started communicating via typing, shares the difference between his speech and the language in his mind.

"I have so much that i intend to say and do but the wrong words and actions come out. These are impulsive.

When i am typing i am accessing a different part of myself.

It is like there are two different sides of me that are fighting to be seen. The external side is always the one who takes over. Communication is the only reason you can know my internal side.

My impulses are the words and topics that come out of my mouth. This is limited to talking about skincare, smoothies, shaves, and basic conversations."

James, who learned to communicate in his thirties, shared:

"I thought I was crazy and maybe dumb for not knowing how to do things that look easy for everyone else. 

I did not understand what was happening. I was so relieved to learn about apraxia as suddenly my life made sense. I realized I was not crazy or dumb and my life opened up. 

Learning about apraxia enabled me to believe I can communicate."

"Nonverbal" Autistic Myth-Buster #2:

Speech Is Not Always The Most Important Goal - Communication Is

Our society puts so much emphasis on speech being the best way for people to communicate. I get it - speech seems like the easiest and most efficient way to express ourselves - IF we don't have apraxia.

The fear is that offering alternatives might inhibit speech, but we have seen the opposite! Providing more communication access builds confidence and encourages purposeful speech, while spelling allows expression beyond physical speech abilities.

Speech can be unreliable. Jakob, a 24-year-old, shares that his speech often inaccurately reflects his true intentions, sometimes saying the opposite of what he means.

"There is so much inside our minds. We want to say yes but somehow yes gets scrambled into no. If you moved to another country where they only spoke a foreign language you would want every opportunity to learn so you can survive. Give your kids every single chance to get those words out even if it looks different or hard."

If we relied solely on speech, Jakob would live a life contrary to his desires, while his family believed they were honoring his wishes.

For the first couple decades of his life, his voice and body insisted that he only eat the same 20 foods. It had to be the same brand, every time. If he didn't get what he wanted, or he was offered something new, it was a guaranteed meltdown. The kind that broke your heart to witness.

After years of trying to expand his diet, they stopped trying. When speech was their main goal, they genuinely thought they were giving him autonomy, by providing him with the foods he asked for.

Once he began spelling his thoughts out, he was able to let us know that his body betrays his mind. He wants to try new foods. He is a self-described foodie at heart!

He has instructed us how to help him specifically. And in the 18 months since first expressing that, he has tried over 600 new foods! This is what it looked like in the early stages, when his body still resisted what his mind was wanting:

Within a year after this video was taken, it has become so much easier for his body to try new foods, including sausage, seafood, risotto, vegetables, and more! He has even surpassed his mom's sense of adventure with new foods. Here he is trying muscles, clams, lobster, and squid for the first time!

This is what he spelled after the whole seafood experience...

"When we walked into Victor's Cafe, it was like we entered a new country. We got there just in time, before a rush of people flooded in. Then the music started and the place lit up. The essence of the whole vibe inspired me to try something totally new.

(Paella De Langasta Y Mariscos, described as saffron infused calasparra rice, lobster, squid, clams, mussels, shrimp, and cervil)

That was like unwrapping Christmas presents and realizing you won the lottery. After opening the gifts of clams and mussels, I got to bask in the presents delivered. Take me on a deep dive to the ocean because I am all in.

Dessert was sure to be a treat. Mango sorbet with a leafy artistic flare (mint). I removed it promptly so I could feast on the orange delight in front of me. Honestly, I thought Julie was crazy or joking when she told me to eat the leafy decoration. Now I am grateful for her encouragement, as usual. I did not know such a refreshing flavor could live inside a tiny sprig of foliage."

Jakob Jordan, The Newly Minted Autistic Critic

So think twice when making speech your main focus. Think about the overarching goal of communication and how that can look different for everyone!

"Nonverbal" Autistic Myth-Buster #3:

Nonverbal Autism Is No Longer Accurate: Try Nonspeaking, Limited Speech, or Unreliably Speaking Instead

Nonverbal translates to "without words" - think about that.

Do we really think their brains are empty? That they don't have ANY words inside their heads?

Think about the impact of describing a minimally speaking autistic child as nonverbal. Our students are more apt to be treated as if they aren't capable of understanding words, just because they can't speak them.

Thousands of nonspeaking autistic people are speaking up by pointing to letters on a whiteboard, stencil, laminate board, keyboard, or any other way that works for them!

Jakob shares...

"Your strong belief in my ability to say so much more than what you see is the most life giving gift i have ever experienced. Giving every human a sense of purpose in the world is life changing."

In Closing

The trailblazing examples set by Hawking, Keller, and Matlin, have shown the world that being nonspeaking doesn't equate to having nothing to say—it's time to carry this understanding forward as we explore the diverse experiences of the nonspeaking autistic community. Together, we can shatter stereotypes, foster inclusivity, and amplify the voices of those who may communicate differently, but undoubtedly have invaluable stories to share.

Inspired To Make A Bigger Change?

Take a deep dive on Apraxia in our module that will equip you to make the changes to be a more confident, knowledgeable support for the nonspeaking people in your life.

Want to jump in with all 15 modules to become a communication parter? Join us in any of our live or self-paced courses!

Or maybe reading is more your style? Check out our book - Breaking Barriers for Nonspeaking Autistic Students: A Toolkit to Enhance Communication in Learning Environments.

We are excited to support you in your journey to unlock the inner voices of your students!

Get Your ToolKit