Finding Voice in Non-Verbal Communication

Not being able to speak is not the same thing as not having anything to say.  

I started reading Carly’s Voice  recently.  She’s a young Torontonian living with autism and can’t speak verbally.

Carly, her parents, and her therapists had a communication breakthrough when Carly spelled ‘help teeth hurt’ using her communication device.  Her therapists had been unaware that she understood how to knit words together.  Up until this discovery, all of Carly’s supports thought she was  developmentally delayed mentally.

In a Helen Keller-esque way, Carly was suddenly able to speak in a way that could be understood by us neurotypicals.  Symbols are clumsy when attempting to communicate with all the nuance that we highly socialized, gregarious creatures are capable of.

Reading Carly’s story sparked three thoughts for this week’s post;

1) Go watch the short film Carly’s Cafe.  It’s how I tripped across her story.  The video has been written and edited to show Carly’s perspective when ordering coffee.  Watching her video made me think of things I can do better when I’m discussing things with people who use alternative methods of communication.

2) Primary care giver’s know the most about who they support. The beginning of the book Carly’s Voice is written by her father.  He talks about the long struggle he and his wife had trying to find a ‘diagnosis’ for Carly and subsequently what the ‘right’ thing to do was as a parent.  He speaks eloquently about how difficult it was to find information on how to be the best parent to Carly and what was the right path to set Carly up for success.

That made me think of a charity I found last week on twitter called SWAN UK.  SWAN stands for Syndrome-Without-A-Name.  This British organization supports families with children who are a mystery to the modern medical and support community.  I haven’t found any similar organizations in Canada but I think this is important.  Positive outcomes come from strong supports.

If these key people aren’t receiving help in the olympic struggle that supports can entail, finding time and energy for going beyond the basics of safety, food, and shelter are far less likely to happen.  I don’t mean this as a criticism, but a simple statement of fact.  We are our best selves fully rested and thirsting for a challenge.  Not dog tired, lonely, and drained.

3)  As I was thinking of voices, finding voice, and communicating in a non-traditional manner paired with self-advocacy, the ever popular Hearing Voices workshop came to mind.  Put on by the Manitoba Schizophrenia Society, it encourages empathy for persons who hear voices by immersing participants in a world where they hear voices themselves and discover first hand the challenges.

For me, being able to experience limitations first hand instantly builds empathy and a more intuitive knowledge of how to respect a person supported.  I’m always curious to hear what tools you guys use.  Any sources you’d like to mention?  Please share them in the comments.

“I have learned more from Carly about autism than any doctor or ‘expert,’ and she has helped me understand and connect with my son in ways I couldn’t have imagined. Her book takes the autism conversation to new places and disproves the ridiculous notion that non-verbal people with autism don’t have feelings and thoughts or are unintelligent. Carly is—for me—autism’s fiercest and most valuable advocate.”

—Holly Robinson Peete, actress, author, and autism advocate