Nonverbal vs. Nonspeaking – Why These Words Matter to Me as a Special Needs Parent

I was recently asked by a fellow parent why I refer to my son Richie who has autism as nonspeaking as opposed to nonverbal. After explaining my reasons, she felt differently and we agreed to respectfully disagree. I know there are parents who refer to their children with autism or other disabilities who don’t communicate with oral speech as “non-verbal” and this is completely acceptable. I also respect the fact that many people will not agree with my thoughts on this topic. I respect this because I was a parent who once introduced my son Richie to other people as non-verbal all the time. I'm no stranger to having unpopular opinions, but after learning just how brilliant our son Richie is, I tend to care little about what others think and more about what I feel is best for Richie. 

The Merriam-Websters dictionary defines the words Nonverbal and Verbal as the following:

NonVerbal – a. being other than verbal; b. involving minimal use of language; c. ranking low in verbal skill.

Verbal – a. of relating to or consisting with words; of relating to or involving words; spoken rather than written. 
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Now, I realize that these definitions basically blow my thoughts on this topic out of the water.  After all, these definitions refer to spoken language or lack thereof. However, there is a huge double standard when it comes to using these terms.  Language and words can be expressed through various modalities of communication (sign, writing, gestures, body language, pictures, and naturally speech). For instance, I am the author of this blog and I am communicating my thoughts and messages to you quite effectively with written narrative. My message is being read, understood and interpreted by you, the reader. Even if writing were my only mode of communication, I wouldn't refer to myself as nonverbal.  My message involves, relates to and includes the consistent appropriate use of words.  Would we ever describe an individual who is mute with no other known disability as nonverbal or simply a nonspeaking person?  The characteristics of a mute individual is described as solely the absence of speech and sound. Please consider that when someone is described as nonverbal (whether the child or adult has autism or other disability), it has been sadly assumed by many that this person has no ability to formulate sentences, responses, opinions, or any thoughts at all. It’s for this reason that in my opinion, non-speaking is a more accurate description of a person who cannot communicate effectively with oral speech.  I suppose what it boils down to at the end of the day is sensitivity, etiquette and respect.  

​In the autism community, there are many people who repeat words, phrases, use some spoken language effectively, or make other sounds that would technically be described in professional and medical circles as functionally nonverbal. Geez, who likes the sound of that? Minimally speaking or unreliably speaking sounds better to me. 

Why does any of this matter? Many parents and professionals may challenge my refusal to use a term to describe my son that has been and is still accepted by all communities. However, history has taught us that words do matter. The word "autism" originated from the Greek word "autos" which means "by oneself." How many years did it take us to figure out that children and adults with autism want to engage in social interaction, make and have friends, or spend time with family?  Using certain words or labels can do unbelievably lasting harm to our children, teenagers and our adult loved ones with disabilities. The use of certain words may contribute to or inadvertently support horrific stigmas that can cause life changing damage to children with disabilities.  All it takes is one word to shift an educator’s approach with a student who has remarkable learning potential, a service providers belief in their client’s abilities, or a parent’s hope for their child’s future.   

For me, the term “nonverbal” is so non-specific, limiting and misleading when used to describe my son Richie. Richie may not speak yet, but he expresses language in other ways such as spelling, using pictures and some words.  I choose to refer to my son as nonspeaking, minimally speaking or unreliably speaking. I choose to presume competence in my son. I choose to be extra conscious of how I talk about him in his presence and absence. I choose to respect him by acknowledging him as a person and regarding his feelings.   

​We have been working with Dana Johnson, a brilliant Occupational Therapist who has a practice in our neighborhood called Interplay. I actually owe my change of heart in using the term “nonspeaking” to her. Dana introduced a method of communication called, “Letter Board Spelling” to us to try with Richie. With this method, we learned that Richie is incredibly intelligent and pretty good at spelling (something we didn’t know). He’s funny, has an incredible sense of humor, and he wants to learn.  At this time, Richie is minimally speaking, but we know he has so much to say and share with us. Our family, therapists and Richie are working hard together to help Richie improve his ability to communicate effectively with us and others. In the meantime, we all wait patiently for that day to come.   

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