Dispelling Common Myths about Nonspeaking People

1. MYTH:  A person who cannot speak cannot think.

FACT:  Just because we cannot speak doesn’t mean we cannot think. Speech is a motor activity, and language is a cognitive activity.  Speech and language are controlled by different parts of the brain. All of us have difficulty executing the neurologic instructions to produce the motor actions that we call speech.  Our cognition is not impaired.  We can understand everything and think for ourselves.

2. MYTH:  The inability to follow two or three-step instructions means that a person is either hearing impaired or unable to understand simple directions.

FACT:  There is nothing wrong with our hearing or our understanding.  We are very capable of hearing and know what we need to do.  However, our apraxia sets in.  Apraxia is the inability to carry out purposeful motor actions. In order to carry out the task, our bodies may need to be prompted. For example, I need to be prompted when taking a shower to ensure that I turn the water on, wash my body, and turn the water off. I know what to do, but the brain-body disconnect makes it difficult to complete all the steps. 

3. MYTH: Some experts question the ability of nonspeaking people to understand, reason and comprehend the complexity of human behavior and emotions. 

FACT: The “experts” have many misconceptions about nonspeakers. This includes researchers, teachers, speech and occupational therapists, and physicians. The fact is that most “experts” have never taken the time to talk with, and learn from, nonspeakers like us. We are the true experts, who can communicate about our lived experience. The so-called “experts” are limited by their reliance on old ways of explaining what our neurologic differences are. We nonspeakers who can communicate are the evidence that the current framework of understanding is totally inadequate and must be replaced by a new paradigm that places apraxia at the core of understanding. Research will come to confirm these points, but that takes time.  For now, we invite the so-called “experts” and everyone else to talk to us, learn from us, and decide for yourselves if we can understand, reason, and comprehend the complexity of human behavior and emotions.

In fact, my family members sometimes seek out my advice when they face challenging issues. 

4. MYTH: A person who is not looking at you cannot be listening to you.

FACT:   Just because we don’t look at you doesn’t mean we are not listening. It’s difficult to listen and watch facial motor actions at the same time. Some of us may even be saying something that we memorized from a song or movie while you are talking to us, but rest assured we are still listening.  How a person appears while listening to you can be very different from what you expect, but we are still hearing and paying attention.

5. MYTH:   IQ tests accurately assess people’s ability to understand, learn, and reason.

FACT: IQ tests should not be used to evaluate people with apraxia. IQ testing is based on students using our mouths to speak or using our hands to write, manipulate objects, or make choices. It also depends on our ability to control our eye motions. These are precisely the actions that are difficult for us due to our apraxia which is a neurologic condition. IQ tests do not measure intelligence, ability to learn or process information. 

Based on IQ testing at 2 different times in my life, my families, teachers and I were told that I had severe intellectual disability and could not be expected to learn much.  It deprived me of many educational opportunities.

6. MYTH:  People with Down Syndrome and other conditions are not capable of complex thinking.

FACT:  Our gross motor, fine motor, and speech skills make everything more difficult for people with Down syndrome and other sensory motor conditions. With these disabilities come obstacles to showing that we understand spoken language and have complex thoughts. By accessing communication methods that work for us, we can show what we have been learning and what we believe. We can begin to determine our own destinies and live life on our own terms. With better communication comes understanding of the true capability of people with Down syndrome. Getting communication methods that work to bypass the limited speech of most people with Down syndrome will transform the world’s beliefs about us. And starting students to spell at school earlier than I did would make their educational experiences more worthwhile.

Always knowing that I was able to comprehend, my parents believed in my spelling and my ability to do more of the regular education curriculum. They supported me to take classes such as Voices in African American Literature, creative writing, geology, global studies, Spanish, and US government. Taking classes with typical peers, having their support, and being accepted for myself has been the greatest part of my education. Representing fellow students with Down syndrome by spelling at school this year was hard, but it was an opportunity to begin advocating for students without a voice to use the communication method that works best for them.

7. MYTH: Listeners should pay attention to the few words and phrases that we say, and the songs that we sing because they contain information that we intend to communicate.  If we can speak some words, then we are able to learn to use our  mouths to say everything we are capable of communicating  and do not need to use letterboards or other forms of AAC (Assistive and Augmentative Communication)

FACT: It may be confusing for people to hear minimally speaking or unreliably speaking individuals talking. Should you believe what we speak with our mouths or what we spell on our letterboards and keyboards?  The words a nonspeaker says out loud are often scripted from movies or videos or other things we have heard. Even when they are used in the right context, the words might not be what the nonspeaker wants to say. Even answers to simple “yes/no” questions are often unreliable when spoken by our mouths. Repeated phrases or singing are “automatic motor” actions whereas spelling on a letterboard or keyboard uses “purposeful motor” actions which bypass our automatic motor loops. It is always better to confirm with spelling on a letterboard or keyboard.

There is an enormous impediment preventing us from using our mouths to communicate everything we want to say. Apraxia makes the motor actions of robust speech impossible for us.  We do not want to be limited in our communication to the same few phrases that we learned through sheer repetition and now utter over and over again.

It feels good in my mouth and in my head to feel the vibrations of my voice.  It is calming and helps me regulate my emotions and level of activation. 

I am always trying to speak my thoughts. The words are in my head and I want to be able to speak them. People need to understand that a lot of words I speak are just me wanting to hear my voice. Listening to movies repetitively calms me and also teaches me phrases. I am apraxic, and a major part of not speaking my thoughts is because wanting and planning actions are different. 

8. MYTH:  People with autism and other conditions sometimes have actions that are disturbing to others. Parents, teachers, and support staff should try to extinguish these misbehaviors.

FACT:  Don’t discourage our stims, but look at why we are stimming. It could be that we are uncomfortable in a situation, and this is our way of coping.  It could also be that we are happy or excited. Some of the things we might do to self-regulate could be pacing up and down the floor, flapping our hands, or saying one of our favorite memorized movies or quotes from a book.  Pacing helps me take some time out for my body to get under control and get back to the task at hand.  This is my way of communicating with people who don’t use the letterboard with me. They need to understand that these actions are a form of communication and are self-regulating.  These actions can be used as our way of coping in the world. It is our response to a sensory overload or overpowering thoughts.  They help us feel calm and in control.

Rather than extinguishing these behaviors, allow us to express what we are feeling, in the same way, we accept how you express yourself!

9. MYTH:  Words spelled by a nonspeaker using a letterboard are not the nonspeaker’s thoughts and ideas but are really those of the person holding the letterboard. 

FACT:  Some people assert that the mere fact that a Communication Regulation Partner (CRP) holds the letterboard makes the nonspeaker’s communication invalid, like an elaborate Ouija Board parlor trick. Actually, the CRP holds the letterboard absolutely still. The only thing moving is the nonspeaker’s arm and hand. The CRP does not touch the nonspeaker in any way. During the early phase of motor skill acquisition, the CRP does coach the beginner’s pointing, eye focus, and arm movements to promote accuracy and rhythm. As the nonspeaker’s proficiency improves, these supports are progressively decreased until there are virtually no supports at all. Some of us become skilled enough to use a keyboard on a stand to type out our thoughts. At no time does the CRP tell the nonspeaker what to spell or directly prompt us after we have acquired the motor control to spell on the letterboard. At no time does the CRP move the letterboard under our finger. 

If you have a conversation with a nonspeaker who uses a keyboard on a stand or lying on a table, the questions about authenticity of our communication vanish. If you had the same conversation with the same person 3 or 6 or 18 months earlier, while the nonspeaker still needed a CRP to hold the letterboard, the words spelled are still the nonspeaker’s thoughts. To require that someone be an expert speller to be believed is like saying that a beginner driver on back roads is not actually driving unless they are on an expressway at night in the pouring rain.   

I find this kind of assertion personally insulting and demeaning.  I am not a puppet being controlled by invisible strings from my Communication Regulation Partner.

10. MYTH: People who do not make progress in using the letterboard in six months will not be able to express themselves in full communication.  

FACT: Having a person learn this method takes time, sometimes a year or more! The more time spent practicing, the easier you will see it become.

11. MYTH: People who use a letterboard to communicate with someone holding the letterboard will not progress to independent use of a tablet or personal computer with a keyboard.

FACT:  Some of us are beginning to be able to type independently on a keyboard. We hope being independent will make skeptics finally believe our abilities. To be apraxic and have people still doubt us after finally finding a way to communicate is extremely infuriating! There are many nonspeaking people who may never be able to type independently due to their severe issues with apraxia, so being on a letterboard is the only way they have to communicate. They need to be believed too!

12. MYTH:  The fact that someone holds the letterboard means that this method of communication is “facilitated”.

FACT: It is frustrating that we constantly have to prove ourselves over and over! The CRP and nonspeaker are learning to be a team, but that does not mean the CRP is telling us what to say! Their role is to help us maintain focus and self regulation. It is possible to influence a nonspeaker if the CRP is not well trained. To be a good CRP you have to be trained by an I-ASC certified S2C Practitioner (Spelling to Communicate Practitioner) so you can learn how to avoid influencing.  A nonspeaker who has a well trained CRP is always speaking their own words, and the CRP is basically just holding the letterboard and recording what the speller says. 

13. MYTH: The small number of people who spell on letterboards and keyboards are truly exceptional. My student/family member could never do this. 

FACT: Many people focus on what they perceive to be the exceptionality of the relatively small percentage of nonspeakers who communicate by using letterboards and keyboards. We are not exceptional, just lucky. Lucky to have been born into families who gave us a chance to try something that enabled us to have voices. Lucky to have families who invested money and lots of time to help us learn to manage our motor systems in purposeful ways. 

Every nonspeaker deserves the opportunity to communicate whatever they want to say. Access to communication is a right guaranteed by the Americans with Disabilities Act. We don’t know how many nonspeakers can learn to do this, but all are entitled to a chance to try. 

Today I am able to communicate well enough to write a blog and 3 books. I know for a fact my family never thought I could do that!  

14. MYTH:  The American Speech and Hearing Association (ASHA) is correct in their position that this method of communication is not evidence based and can cause harm to nonspeakers.

FACT: Some people ask about research supporting this method of communication. The people at ASHA who approved this position have never taken the opportunity to have a conversation, face to face, with some fully proficient letterboard users. They have not done their own first hand research. 

We, nonspeakers, are the evidence that this method works. With it, we write blogs, short stories, books, and poetry. We succeed in college and graduate school. We plan and conduct meetings.  We plan our lives and advocate for ourselves and others. More evidence is seen in numerous examples of nonspeakers reporting symptoms to doctors which resulted in important, and sometimes lifesaving, diagnoses being made and addressed. Published research takes time and will come in due course. There is already an eye tracking study that confirms that nonspeakers’ eye gaze moves to the letters on the letterboard before finger pointing just as quickly as it does in other people.

The truth about harm to nonspeakers is that we are many more times as likely to be abused, both physically and sexually, as disabled people who can communicate. The real harm is in not giving us the tools to have agency in our lives. 

Personally, I spent 25 years being unable to communicate.  During that time, I felt despondent and ignored. I have been hit and pinched by staff with no way to report it to anyone. Don’t talk to me about the harms of using a letterboard to communicate!

15. MYTH: Placing nonspeaking students exclusively in special education classes instead of in inclusive academic instruction constitutes an “appropriate” education.

FACT: Placing nonspeaking students exclusively in special education classes instead of inclusive academic instruction deprives us of the right to learn and receive an appropriate education. Simply because a student cannot speak does not mean we cannot learn. 

My life has been a difficult journey of limitations based on the beliefs of the “professionals”. To assume that we cannot learn is detrimental to our self esteem, our knowledge base, and our emotional state. No more repetitive learning of basic skills, kindergarten education, and baby talk! There is no harm in believing someone can learn and being wrong. 

Don’t keep making the same mistakes with future generations. Make a true difference in the life of a nonspeaker by presuming competence and providing us an age appropriate education with a diverse group of peers, both neurodivergent and neurotypical.  Our lived experience should weigh heavier than the unproven theories of those that have been deciding our fates in the past.

16. MYTH: Schools are doing an excellent job teaching nonspeakers to use AAC technology to communicate everything that these students are capable of saying.

FACT:  Currently, only a very small percentage of nonspeakers graduating from high school have the ability to communicate as richly as those of you who use your mouths because we are only given a communication device or a tablet-based app with speech generating capability.  We nonspeakers want the tools and supports to communicate everything we want to say.  Limiting us to wants and needs and simple conversation is totally inadequate.  Most picture-based cards and computer- or tablet-based apps have severely limited vocabulary. 26 letters equals infinite possibilities.  We want to exercise our right to full communication. 

I want to write stories and essays and blogs and screenplays and poetry. I want to argue with my family and friends. I want to plan my own life. I don’t want to have to hunt in computerized folders for the words I want to use. 

This blog was written by the following members of the Spellers & Allies Advocacy Network:

Ben Crimm, Pennsylvania, USA

Gregory Tino, Pennsylvania, USA

Declan Lavery, New Zealand 

Matthew McGrath, Montreal, Canada 

Will Stephanou, Pennsylvania, USA    

The I-ASC Spellers & Allies Advocacy Network is a group of spellers and allies who advocate together around issues that concern nonspeaking people, such as agency, autonomy, and access. Through public education and advocacy campaigns, we seek to make real change for all nonspeaking people. The Spellers & Allies Advocacy Network welcomes nonspeaking, minimally speaking and unreliably speaking adults above the age of 18. We welcome allies and anyone interested in becoming an ally between the ages of 18-30.