Friday, December 7, 2012

@MamaBeGood: Use Your Words: Non-Verbal, Speech, and AAC

Use Your Words: Non-Verbal, Speech, and AAC

by Brenda Rothm,
December 6th 2012

I see a little girl every week at events that my child attends. She's great. She's nine years old, has a fantastic laugh, and a mischievous sense of humor. She loves puddles, chocolate cake, and apples. She has a small crush on my son. She's also non-verbal. So, how do I know these things about her? I talk with her, play with her, sing with her, tease with her, watch her face and her gestures. She's very expressive.
She has an AAC device, but she's not allowed to bring it with her. She has a few signs in sign language. I hear her as she whimpers when the people who know her best leave and she can no longer communicate. The therapists there encourage her to talk. "Use your words," they say. "We can't go on until you say it." If she tries to sign a response, they pat her hands back down. "No, you have to say it."
First, she tries to tease them out of their inflexibility. She laughs. She points at colors, trying to distract them, but they insist. She gets frustrated and frowns. When they stand firm and she still produces no noise, her face goes blank. Sometimes she produces a grunt to satisfy them. Sometimes, she just stops, withdrawing into herself.
It makes me incredibly sad.
These therapists mean no harm. They sincerely think they're helping. But they don't understand that all communication is valid, no matter the form. They are under the mistaken impression that allowing a child to use sign language or AAC will discourage her from using her voice. That she won't work at producing words with her mouth.
What they don't see is the damage that invalidating her language does. Denying her language silences her. It leaves her with no voice. It teaches her that her choices don't matter. And that lesson about the value of her voice lasts a lifetime.
We already know about sign language and its usefulness in allowing babies, toddlers, young kids to express themselves. Sign language is like AAC. They don't prevent language. They allow it.
Attitudes about AAC in children reflect common beliefs about children and about disability. Experts believe that therapy's role is to improve children. That we can't improve children by supporting their challenges. What that means is that disability is a weakness, a matter of effort that can be overcome. So we come to believe that disabled children should be become more like us, speaking like we do, and that they can with proper teaching and proper effort.
Imagine a grown man who develops amyotrophic lateral sclerosis (ALS) and loses his ability to speak. Would we treat him as we do disabled children, insisting that we won't listen to him unless he uses oral speech? Or would we want to give him tools - pencil, paper, laptop - to allow him to communicate right away?
What if we can encourage our children's communication by giving them the means to communicate right away? What if they could tell us how they feel about not being allowed to communicate? What if they could tell us that they are communicating right now?
"Use your words." Her words are her hands. Her words are her AAC device. We can't hear her words if she's not allowed to use them.
If you have questions about AAC, autism, and communication, talk to:
Shannon about her son's iPad and what it's meant to him. Paula about being a (sometimes) non-speaking adult. Neurodivergent K about being told that her inconsistent language meant she wasn't trying. Kerima and her non-speaking son's AAC.

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