“Not Speaking has no reflection on what is being thought on the inside, being a non-verbal person with Autism in my early years I’ve come to value words, they shouldn’t be wasted nor abused they should be cherished used positively and productively.”
― Paul Isaacs, Living Through the Haze
Last night, my husband and I watched a movie entitled, “A Mother’s Courage – Talking Back to Autism“. It is a documentary chronicling part of the journey that Margret Dagmar Ericsdottir and her family have taken to aid their son Keli in finding his voice. Besides this film, which is narrated by Kate Winslet, there is a book entitled, “The Golden Hat”, which introduces us to Keli and his family. They have also set up a foundation to “improve the lives of those with autism” and “honor the intellectual capabilities of those with autism”, entitled The Golden Hat Foundation. This acclaimed documentary is definitely worth watching.
As a mother of a little boy who was nonverbal when first diagnosed with autism, I could empathize with the sadness they felt and the fears they had for their son’s future. I still remember the first words that he regained. However, it was several months after he gained words back that he could be classified “verbal”. Although he had sounds and some words, he didn’t really use them to communicate effectively. However, now at the age of 6, he is near age appropriate with his language skills and is usually able to communicate his needs effectively (without screaming). Like was mentioned on the film, though, he still has difficulty pulling words to describe feelings and experiences. For example, if I ask, “Would you like an apple?”, I can get a quick, “Yes, please!” Or if he wants an apple, he can spontaneously say, “Mom, can I have an apple, please?” However, if I ask, “How was your day?”, I get a “Good”. If I probe further, “What did you do today?”, this becomes more difficult (some would say this was typical for most kids! While I understand what they mean, this difficulty in pulling even concrete thoughts, let alone abstract thoughts, from the deeper parts of the brain is unique to autism. It’s not that my son doesn’t know what he wants or what he did, but there is a block between his thoughts and his speech. Sometimes we are able to work around the block, but usually we have to wait until the thoughts “work their way” out on their own instead.) Temple Grandin, a famous individual with autism, is interviewed on this documentary, and she comments on this phenomenon of autism. Regardless if a person is verbal or nonverbal, communication in this way of having to pull experiences or feelings out of the brain and into a form of communication remains difficult.
“A Mother’s Courage” gives hope to families of children who are older and remain nonverbal. In particular, it discusses the Rapid Prompt Method of communication, a method invented by Soma Mukhopadhyay to help her nonverbal son Tito. (See her link here). I had heard about this method before at several conferences, but it wasn’t something that I looked much further into, seeing that my son at that time had become verbal. I have heard numerous reports, though, of how it has helped many children, especially ones who are older and whose parents were told they would never “talk”. One such story can be found here. Linda, who wrote this article based on her experience with her son Beau, is an extraordinary mother who has worked tirelessly for her son and for other children affected by autism. The Rapid Prompt Method has given her son a way to finally communicate, so much so that now he can tell her when he’s in pain, instead of self-injuring or being destructive.
For any autism parents out there who are told that their child is too old to start to communicate, never give up. You never know when you will find the right thing for your child. With autism numbers on the rise, more and more interventions are being discovered that can help our kids. You’ll never know when the next book you read or documentary you watch might be the thing that will help you reach your child.