Non-verbal -- but with lots to say

augmentative communication Apr 11, 2016

April is autism awareness month. At CoughDrop we want to raise awareness and offer support to all whose lives are touched by autism.

According to the CDC, 1 in every 68 children in the United States has some form of autism. Autism is not choosy; it affects people from every race, gender, religion, age group, and social class.

In addition, studies show that 1 in every 4 people with autism struggles to communicate verbally. That means that 25% of those with autism find it difficult to make their voice heard.

But our world is tightly woven around verbal communication. It is difficult for most of us to know how to behave around someone who can't use their own voice to speak.

So, we'd like to give a handful of suggestions shared with CoughDrop by families facing non-verbal autism showing simple ways you can connect with someone whose voice is silent.

1. Presume Competence: Please don’t talk to me like I am stupid. I struggle to vocalize, but I can think. Often, autism causes a disconnect between the brain and the body making physical commands -- like speech -- get jumbled or lost. However, my brain still works and I can see, hear, and understand even if it is hard for me to respond verbally. Tell me a joke, share a story about your day, read me a book, show me an experiment -- I know more than some people give me credit for.

2. Talk TO me (not around or about me): I like to be included in life, just like you, but no one likes to be talked about. So DO ask me about my day at school or my favorite color or the television show I like best. Look at me when you ask questions, and move close enough that I can really see you. Maybe even touch my arm or leg to help me focus (watching my family interact with me will give you great cues on how to talk to me). I may need help to respond and my parents may step in to guide the answers, but when you talk TO me it shows me that you care about me and that you're interested in my ideas and opinions, that you're interested in communicating WITH me.

3. Expect a Response: It's amazing how much encouragement I get when a person talks to me expecting that I will respond. If someone talks to me while looking at my mom or dad for the answer, I'm much less motivated to engage with that person. But when someone gets down on my level, focuses on me, and works to actually connect with me I'm far more likely to make the the effort to connect back (because communication does take a LOT of effort for me). Now, that doesn’t mean I will be exceptionally attentive every single time you talk to me (who is?), but if you speak to me assuming I'll reply I can feel your focus and it helps me to focus as well.

4. Be Patient: Communication is hard for me. In fact, communication can be exhausting for me. Sometimes I use my eyes to tell you yes or no, sometimes I use an augmentative communication device (like CoughDrop) to pull words out of my mind and into the open. No matter how I express myself, it takes work. That might mean you have to wait longer than you are comfortable with to get an answer. It might mean I blurt words through my AAC app after the conversation has already moved on. Please don’t ignore me. I have something to share and when you respect my words and are patient enough to let me find them, I learn to trust you and I know that my efforts were worth it.

5. Don’t Give Up: Learning a new language is hard, and in order to understand one another you and I both have to learn to express ourselves in a new way. It can be intimidating. It can be scary. It will take practice for sure. But please don’t quit. I have so much I want to say. Take a deep breath, relax and let’s work this out together. I can feel when you are anxious and sometimes that is too much pressure for me so I may shut down. Remember that I’m a person first; I have feelings, thoughts, ideas, and opinions. I want to share them with the world. When you consistently make the effort to engage me and seek to get to know me -- me, as a person -- I see that you aren’t the only one who can communicate -- I can do it too. And that is a powerful feeling (for both of us).

Learn more about how non-verbal autism affects members of our CoughDrop family.

The Frustration and Joy of Autism Parenting

Not an SLP, but AAC is a big part of my life

Melissa DeMoux

Former CoughDrop Director of Marketing and Support -- worked with AAC communicators & teams