Non-verbal is a funny term, funny in like doesn’t truly describe an autistic child that has limited language. They might not verbalize much but they do verbalize some. My son, Teo, has been described as non-verbal for most of his life, but he is by no means quiet. He’s nine years old now, and I have to say, it’s not an accurate description of his verbal skills.
Teo woke up at 1:45am this morning, talking. Not talking to anyone, just to himself or maybe to his stuffed penguin. He was “scripting”, really. Scripting is when Teo recites lines, phrases, and words from things he’s heard from videos, movies, music, or people. He will string words and phrases together to get his point across, but most of the time he just scripts just because. To us it seems like “just because”. Sometimes it looks like he’s reciting lines from a play that he is memorizing for a performance, moving his arm up and down, pointing, turning, and even dancing. It’s constant. So far he has been scripting on and off for the last five hours. FIVE HOURS! My son is not non-verbal, he is very verbal, he is not conversational.
In the middle of scripting he will stop to use what the therapists call “functional communication”. He will ask for something he wants like chicken nuggets or a sandwich or juice. He will even sometimes use a script “functionally” like the time I tried to hide the juice boxes and he looked at me and said “nice try!” I laughed out loud because the timing was so perfect. That was a script from a cartoon that he used appropriately and in context. That’s how the professionals say it “appropriately and in context.” I actually think scripting has opened up an entire world of expressive language he wouldn’t have otherwise. We would teach him simple phrases like “I like”, “ I don’t like”, “ I want”, “all done”, “more” - he is much more creative with his language when he chooses to use it than what we’ve taught him. I think, for him, it’s easier to pick up words and phrases from a computer screen than from a person, although he has picked up a phrase lately that I’m not proud of - oh shit. He has used it appropriately and in context so I can’t be mad at that, I’m quite proud actually.
I’ve never wanted to stop him from scripting, but at 1:45am, I sure want him to be quiet. I can’t just tell him to stop and be quiet. Well I can tell him to be quiet and he might for a second or two, but then he starts all over again. He can’t stop himself. Literally, he cannot stop and won’t stop. I can re-direct him by singing Twinkle Twinkle Little Star or pick up one of his favorite books like Goodnight Moon and start reading, but honestly, I need some rest so I just lay there while he jumps, runs, tumbles and scripts. It’s constant, all day long, even at school. We just have to listen to him like a TV that’s turned on in the background that is stuck on the same channel. I can tune him out, but it’s unavoidable. He’s loud. At some points he will screech a very loud and disruptive screech something like a cross between a hyena and a zebra. It’s startling, even after seven years of the same screech, it still startles me. It’s like having a babbling toddler that has discovered his voice but yet to discover how to string words together in a sentence. I don’t want to discourage him from using his voice, but I’d love to turn the volume down, change the channel, or be able to use the mute button.
A friend of mine called her autistic daughter pre-verbal before she could talk. I liked that term, it implied that one day she would be verbal and able to have a conversation one day. I still can’t call Teo pre-verbal, because he is talking, he’s using words, all the time. Another term is “language emerging”. That’s another term I like because it implies that functional language is coming, it’s on it’s way, it sounds hopeful. Another term is “partially verbal”. Okay, yes, I can consider Teo partially verbal. He is able to use some words functionally and within context, but back and forth conversation is hard for him. Speaking of context, funny story: a friend of mine has a “non-verbal” daughter. Her daughter was at school and a school mate was getting on her nerves, constantly in her face, bothering her. Now at the time, she literally had never spoken one word, not even scripting. She turned to the girl who was bothering her and said “fuck off!” My friend was so proud and said in laughter “she was not wrong!” Nope she was not wrong, not at all.
I heard a Psychologist use the term reciprocal feedback, during an ABA session with Malc, he said “what we want is reciprocal feedback”. Hold on what? I asked him to repeat war he said. The room froze for me when he said those words, I wanted to truly digest what he had said. He went on to explain to me and two other therapists that were in the room, but he didn’t need to explain anything, I knew exactly what he meant and it made so much sense. To think about a conversation, a back and forth interaction, as reciprocal feedback. Reciprocal implies that it’s mutual, it’s not one sided. Scripting can feel very one sided and can make me feel lonely. I’m not always included in his world of words. Feedback typical can be anything but here it means using your voice to deliver the feedback, the words. Mutual words, that’s how I broke it down in my head. The main reason for any type of communication is connection, we as humans want to connect to each other in a meaningful way, and sharing words is meaningful.
What I had been waiting for from my “non-verbal” son was reciprocal feedback, a mutual connection using words that mean something to the both of us.
In my lifetime, I feel I’ve taken for granted the beautiful connection that we share when we ask another person a question like “how are you?” and they respond “I’m well, how are you?” and then it keeps going, a connection is made. Sometimes it is sustained for long periods of time and sometimes it’s short, but it is meaningful to both people. I am missing the connection with my son, both of my sons, that conversations provide. Of course I still feel connected to him/them, he has many ways to communicate; AAC device, sign language, gestures, body movements, and picture icons, but I long to know what is inside his head. I do cherish the words he does share with me even if he is copying them from something he’s seen on YouTube. Every once in awhile he will use his own words expressively and it is beautiful and we celebrate, we celebrate big! I know that one day we will have a conversation that lasts more than one back and forth, I know one day he will grab all the words and phrases he’s accumulated and stored in his memory box to use them meaningfully. How do I know that? Because he is my son and he is motivated by being able to express himself. Scripting is the gateway to being fully self expressed.
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