“Nonverbal autism” and “Nonspeaking autism” are often used interchangeably to describe the same challenges. But which term you use can matter.
It’s very common for people on the spectrum to experience speech delays, issues with expressive language development, and other communication concerns. But what does that mean? What does it look like, how do we talk about it, and what accommodations or treatments are available?
What is nonspeaking autism?
“Nonspeaking autism” is when an Autistic person experiences difficulty, delay, or inability in speech and cannot rely on speech alone to be understood. Speech difficulty is a very common issue for Autistic people, affecting as many as 25-35% of the Autistic population, depending on how you define it. This is at least in part due to a neurological condition called apraxia, also termed dyspraxia in some medical disciplines. Apraxia prevents the body from carrying out instructions from the brain.
One study in 2015 set out to determine whether people with apraxia were also given an autism spectrum disorder (ASD) diagnosis in error. The study looked at children with ASD diagnoses and kids with apraxia diagnoses to make sure that all of the diagnoses were accurate and appropriate. The study found that 63.6% of Autistic children in the group also met the criteria for apraxia.
All in all, between 25-30% of Autistic people are nonspeaking or minimally speaking (some research may say “minimally verbal”). An Autistic Nonspeaker who is able to produce speech sometimes but cannot rely on it to make themselves heard all of the time can also be described as minimally speaking.
It’s very important to note that nonspeaking Autistic people often don’t have issues with language development per se – they still process language just fine. Being unable to speak doesn’t mean you can’t understand speech. In addition, nonspeaking Autistic people often communicate with words using augmentative and alternative communication (AAC) devices, spelling and/or typing, speech-generating devices, and more.
What is nonverbal autism?
“Nonverbal autism” is a label that has long been used for people with an autism diagnosis who have limited or no speech. While the term “verbal” can refer specifically to spoken words, the principal definition is “having to do with words,” not speech specifically.
Some people may assume that an Autistic person who can’t speak also can’t understand written or spoken language. However, it’s important to note that just because someone is unable to speak doesn’t mean that they don’t have language.
Many nonspeakers feel that the term “nonverbal” discounts their ability to understand language and to communicate. They argue that sign language, writing, and communicating words through AAC devices fall under the umbrella of verbal communication. They and their allies prefer to say “nonspeaking” instead. Others use the two terms interchangeably.
Advocate perspectives
What do Autistic people and nonspeakers themselves say about the language that they prefer? Different people have different reads on the terms “nonverbal” and “nonspeaking”, even among the Autistic writers who work here at Bened Life.
Isaiah Tien Grewal
Autistic nonspeakers are commonly labeled ‘nonverbal,’ but that word means without language, a cognitive ability different from speech. Recent living evidence of nonspeaking Autistics, like me, who can type their thoughts, proves that the outdated nonverbal classification is wrong. My capacity to comprehend is not affected by the sensory and apraxia-related issues of my autism.
The ability to fully communicate changes the trajectory of an Autistic’s emotional, academic, and daily life. If your Autistic loved one can't tell you what they’re thinking and feeling, it will become more and more dreadful for them as the years pass trapped inside their bodies.
(Isaiah is a nonspeaking Autistic man who has written at length about nonspeaking autism.)
Tiffany Joseph
The Merriam-Webster Dictionary states that the word, nonverbal means, ‘not involving or using words.’ But that very definition is inaccurate at best, and insulting at worst. This is why:
Nonspeakers indeed use words. They have the same words that the rest of the population has in their minds. Yet, something happens between the brain and the body’s transport of the signal of the intended movement of the muscles that make speech.
This includes coordinating breathing and the diaphragm, the movements of the mouth, tongue, and jaw as well. It takes so many different steps to say even one word, so imagine the difficulty of a conversation.
The absence of words out of the mouth doesn’t equal the absence of words in the brain. One is not the opposite of the other. It’s unethical to automatically assume so by using an inaccurate term that’s entire meaning does.
(Tiffany Joseph is an educator, Autistic person and mother of Autistic children.)
Casey-Lee Flood, RN, HWNC-BC
Non-speaking vs. non-verbal has become a big topic of conversation and rightfully so. As an Autistic registered nurse, I am one of the medical professionals actively changing what terminology I utilize.
There is no actual “non-verbal” diagnosis that exists; it is/was used more as a descriptive label. It is not inherently an ableist statement. Within western medicine it simply means a person has an inability or decreased ability to use spoken language to communicate. Non-verbal is just about spoken words. It does not describe every way the person can or cannot communicate with the world around them.
Despite knowing that “non-speaking” is actually more direct and concise in explaining a part of a person’s neurological make up, when I have to document in order to get services covered, and communicate clearly with other medical professionals. I find that “non-verbal” is the term I have to utilize.
For as fast as medicine can advance, some changes take time. And for a lot of professionals, they do not have the lived experience to fully understand why the change in language is important.
It is completely appropriate to gently correct a nurse or doctor if they are using outdated terminology that feels/is demeaning or dismissive. Just know sometimes in the medical world, words can have a different or more straightforward meaning than they do in the day to day world.
(Casey-Lee Flood is an Autistic registered nurse.)
Doctors and nonspeaking/nonverbal autism
How do doctors identify nonspeaking autism?
Diagnosing a child with autism is often a lengthy, multi-step process. Early signs that doctors look for may include limited eye contact, limited social interaction, echolalia (repeated words) and other challenges with social communication skills. If the child is nonspeaking, then those delays in speech may also be a sign of autism.
There are several different scales and tools to identify autism, and some of them can account for an Autistic child who has difficulty speaking. Surveys like the latest versions of the Gilliam Autism Rating Scale (GARS-3) and the Autism Diagnostic Observation Schedule (ADOS-2) can both be used in this way.
Should you pursue a nonspeaking autism diagnosis?
Getting a formal autism diagnosis can be complicated; however, it can also open up access to several important types of aid and resources. Nonspeakers may need more accommodations, and/or less common ones, to learn to communicate independently and move through neurotypical society than other Autistic people do. Odds are that most nonspeaking people (or their carers) will therefore pursue a diagnosis.
What support is available for nonspeaking autism?
According to research, the age when an Autistic child first starts speaking can be an important indicator of their success in communication overall. You may want to work with a speech pathologist in order to help your child have the strongest chance at acquiring speaking skills.
That said, some people’s bodies simply don’t let them speak, no matter how well they know the language or how much they want to, as Isaiah’s striking poem about being in speech therapy illustrates.
There are many ways to communicate beyond traditional body language and speech. Researchers are developing more tools for nonspeaking people all the time. Here are two that have helped many nonspeakers to express themselves.
Augmentative and alternative communication
Augmentative and alternative communication (AAC) is a broad term for any communication method used by a nonspeaking person. AAC may include “low-tech” options like gestures, writing, drawing, or spelling things out on a letter board. It may also include more tech-driven options like tablets or a “speech-generating device” that uses a computer that can speak.
Spelling as communication
One major avenue for nonspeaking communication is “spelling as communication.” The International Association for Spelling as Communication is dedicated to helping nonspeaking people overcome the barriers posed by speech.
Spelling as communication uses letterboards that allow people to spell out their messages bit by bit. Doing so also involves developing the gross motor skills needed to point at individual letters. Over time, individuals may learn the skills necessary to point or even type to form words and sentences.
This learning process is challenging, but unlocking new avenues of self-expression is important, especially when your options are limited.
The good news about nonspeaking autism
Difficulties in speech provide obvious challenges to everyday life. The good news is that we’re living in an era of new research, sensitivity, and understanding. Autistic advocates have fought hard to make people understand the difference between not speaking and not communicating. And with tools like spelling to communicate and other interventions, more and more people are finding their voices.
Recommended reading:
Nonspeaking Autism: My Point of View
I-ASC & Motormorphosis: Accessible Communication for Nonspeakers
