Through My Eyes: speech is hard

Hi again, everyone.  This is the third post in my series about what it is like to have autism. For those who haven’t met me, let me describe my current relationship with language and what the journey has been like for me. Speech is the natural way that most people communicate with each other and is one of the first things that we start learning as an infant.   But for some reason, the brains of many people with autism work in a different way. For us, speech is hard.  

When I was diagnosed with autism as a young child, I had some verbal language. To clarify, I could say some words, but words weren’t about communication for me.  Words were more like objects in my environment like toys or stuffed animals. I didn’t understand how saying them out loud affected other people. I said them because when I did, my anxiety decreased. They were part of my anxiety-protection toolbox, and that was all. My thoughts were my thoughts, and my words weren’t connected. 

I started ABA therapy immediately after I was diagnosed, and, among other things, they started drilling me with new words. That was fine. I didn’t mind learning new words. But I had a much harder time in using those words to communicate an idea. Through repetition, I learned some phrases and memorized when I was supposed to use them so I would get reinforced for doing so, but there was still a big gap from what they were trying to teach me and how I was learning. I still didn’t see words as a way to communicate my thoughts. 

As I got older, my vocabulary increased, and I could repeat most words if I was asked.   I did figure out that people reacted certain ways when I said certain things and learned that I could meet my needs faster that way. So my communication became tied to two things:  meeting my basic needs and relieving anxiety. My thoughts were still very disconnected from my verbal skills. 

In the meantime, I was becoming increasingly frustrated because, on the inside, I felt like I was developing at an age-appropriate level, but no one could see it.   School then became a waste for me because I was stuck learning the same basic things over and over since I was unable to demonstrate that I needed and wanted to move on.   I felt like I was intelligent and had a lot to contribute but feared that I would be forever stuck inside my own head.    

As a teenager, I started working with Soma Mukhopadhyay who developed a method called the Rapid Prompting Method.  She works a lot with nonverbal kids, and her method does not require you to speak. She teaches you to spell out your thoughts and then writes them down for you on a piece of paper. 

When I saw my thoughts outside of my head for the first time, it was magical! Soma knew that I was in there and just expected me to be able to answer her questions.  Her belief that I was capable helped me to have more faith in myself and gave me hope.   

Since then, I have developed my writing and transitioned from her letter board to an iPad. My life has changed so much for the better because now I understand the power of words and how words can change the world. Even my words!

So, for all of you working with kids like myself who struggle with verbal language, don’t get stuck trying to teach the same thing over and over.  Move on!  Keep teaching!   I am willing to bet that the kids you are working with are absorbing it all.  Forget about spending so much time on speech and find a way to help them communicate. That is what matters. In the process, some of us are going to blow you away with what our minds can do.

Speech is hard.