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

9/11/2018

14 Comments

 
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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.  
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​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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​Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
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Sincerely, Christine SensoryFriends

14 Comments
Full Spectrum Mama link
9/11/2018 11:15:16 am

Yes, YES, YESSSSS!!!!!!!!

Brilliant.

You've got one convert here FOR SURE, and I bet many more as the post gets disseminated.

Thanks and love,
Full Spectrum Mama

Reply
Christine Goulbourne link
9/11/2018 10:26:08 pm

Thank you, dear friend.

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Marge Blanc link
9/22/2018 01:50:19 am

I could not have said it better, but I have tried many times! My only caveat is the occasional reference to 'verbal' as somehow describing spoken language as opposed to written. My Merriam-Webster says Verbal is "of, relating to, or consisting of words." Amen! Regardless of modality!

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Christine Goulbourne link
9/24/2018 07:38:14 pm

Thank you for visiting and sharing your thoughts with us!

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Pheonix
7/16/2021 01:04:06 am

I’m a bit confused, the definitions you gave define verbal as spoken words, “spoken rather than written” so verbal is a synonym of speaking, so nonverbal and nonspeaking mean the same thing. When I refer to myself as nonverbal I’m simply communicating that I don’t use verbal communication, not that I’m incompetent. Well, I am incompetent at speaking /j so what exactly is your point?

Reply
Christine Goulbourne link
7/27/2021 10:13:50 pm

Hello Phoenix, Thank you for visiting the blog post. In most dictionaries, the first definition for "verbal" is relative to words or the form of words. Of course, it does mean spoken rather than written. While my son Richie may not speak using words, he certainly knows and understands them. More importantly, he has expressed that he prefers to be referred to as non-speaking by spelling it out to me. Please note that people who are not familiar with the disability community often assume that individuals who are non-verbal have no thought process, it's sad but true. And this simple change of phrase, I feel, may help to change this thinking. I, of course, will always adhere to a person's preference first (with regards to their wish to be identified as non-verbal or non-speaking). Again, I thank you for sharing your thoughts. It is a great question.

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Marge Blanc link
7/28/2021 12:00:07 am

Phoenix, my use of 'verbal' is the more inclusive definition, meaning about words, or language, whether spoken, written, typed, letter-pointed, signed or accessed through AAC. I agree with you that 'verbal' is about language — expressed with any modality. Speech does not equal language or vice versa!

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Christine Goulbourne link
7/28/2021 11:02:54 pm

Hi Marge! I welcome all thoughts and opinions, but more importantly, I respect everyone's wish to be identified as they request. Thank you for visiting!

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Full Spectrum Mama link
7/28/2021 11:42:02 am

Beautiful reply, @Christine. I was thinking to reply myself to Pheonix's heartfelt comment. Hope they feel heard and honored.

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Christine Goulbourne link
7/29/2021 07:23:59 pm

Thank you, dear friend. I can only hope that all opinions are heard and respected. There is nothing wrong with thinking differently. Take care!

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Tonya
11/16/2021 08:43:53 am

Given that verbal means communication through speech, non-verbal and non-speaking are synonyms.
It strikes me that the hesitation to use non-verbal is simply to avoid associating your son with kids who have disabilities in addition to being non-verbal. Why do you need to do that?
I have met tons of non-verbal kids and every single one of them can communicate in ways other than through speech. Non-verbal does not mean non-communicative.
If you choose to use non-speaking, that’s fine. But then use it for all non-speaking children/people.
Otherwise we risk creating a multi-tiered categorization of non-verbal kids based on others’ perceived idea of how well they can communicate.
The idea of having a category of non-verbal person that simply indicates they don’t have any other disabilities, is very alarming to me. The kids with other co-existing disabilities deserve the same expectations of competence, the same supports and the same inclusion in society.

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Christine Goulbourne link
3/1/2022 11:45:01 pm

Hello Tonya, thank you for visiting and sharing your opinion. My choosing to describe my son as non-speaking is simply his and my choice. Having spoken to many parents, teens, and others who are not involved in the disability community have admitted to me that they too were under the impression that people who were non-verbal - couldn't really learn, or cannot comprehend, etc. It's a classic issue that has been around for years. I have spoken to other parents of kids with cerebral palsy who have no known developmental issues, but because they have issues with direct speech, and major difficulty with effective communication, they have been treated like they have issues with reading comprehension, complex math equations, etc. You mentioned being alarmed by believing that I'm implying that being non-verbal indicates no other disability. Please note that's not true. My son is not only limited in speech, (it's exciting times as he's been learning to say and use new words) he has processing and developmental delays that impact many of his life skills. However, intellectually, he is brilliant. He listens and comprehends everything I read to him and he is able to spell his responses - quite accurately on a good night, when his eyes, hands and coordination is obedient to him. He makes choices with pictures and makes his needs clear. I can't tell you how many times I have heard people say, "Are you sure he understands you?" And that response is solely because of my son's struggle with sharing his thoughts effectively through expressive language. And I agree with you that we must presume competence in all individuals with disabilities. I have always felt that way. I simply choose to identify my son as non-speaking and he chooses this as well. I understand we may not agree, and I respect and truly appreciate your comment. Thank you.

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Ettina link
2/12/2022 11:58:14 am

Seems ironic to me that you're so worried about the implications of nonverbal vs nonspeaking, but so unclear about how you describe yourself that I can't tell if you're actually disabled or just have a disabled kid.

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Christine Lorraine Goulbourne link
3/1/2022 11:50:06 pm

Hello Ettina, thank you for visiting. Please note my blog title states that these are my thoughts as a special needs parent and I refer to my son as having autism in the first paragraph of the post.

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