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in meta •  7 years ago  (edited)

You briefly mentioned non-verbal autism, and you got really close for what it seems to be like for my son. His vocabulary is HUGE, but his ability to express himself by stringing those words together is limited to a few small 3-4 word phrases.
When he is forcing to get words out, I can tell he knows what he wants to say, but gets frustrated that he can't get it out of his mouth. When you said they must feel like "Why can't I just get it out! Come on!" (I'm paraphrasing, I think.) you're spot on, in my personal experience.

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For my oldest, if he really wants us to know what he wants, he'll use the color of the thing. Sometimes, the color sticks even though it makes no sense over time. Sometimes it depends on the location and situation.

  • black - I want to go to my room to be alone.
  • yellow - I want to listen to that one CD I like that you have in the van.
  • green - I want to play with that one particular toy.
  • pink - I want my sister to get out of my face.
  • red - I want to watch YouTube.
  • purple - I want some ice water (not just water, specifically ice water).
  • orange - I want an orange.

Blue and white have been used, but not for anything that has stuck.

He did this color thing all on his own. It might have originated with orange. Fruit is absolute favorite food. He'll eat it until he pukes.

That is truly remarkable! I've heard of people associating words with colors before, and it makes sense to me in a way.

Thinking like a speech pathologist, might colors be a way in to get him to expand his phrasing? Our way in to our son was vehicles. That's how he learned colors, shapes, spelling, even used car shaped pop beads to get his motor skills going.
If he will echo you at all, you might be able to eventually get him to say "I want red."
Then, "I want red youtube."
Then remove the red for "I want youtube."
It won't change overnight, of course. But if you can break through and get that first "I want" the others may come on easier.

I really enjoy when the speech therapists will allow me to be in the room when they work with him. I try to retain as much as I can to use at home.

Yep, he's become more and more receptive to expanding the phrases. He loves the sounds of words. He just doesn't seem to find them as useful.

He likes to see what single word he can say to get us to talk or sing for a long time while he sits back and grins.

Just entertaining to him. Word judo. "What's the minimum verbalization I can get away with today?" To be honest, I actually get that. If I could get away with "coffee!!" I would. But I also value interpersonal relationships.

He's much more interested in reverse echolalia. And why not? We ask him to say these meaningless phrases, why can't he ask us to do the same?

He loves to make deals. "I'll get off the bus if you will promise I can listen to the Wiggles Popcorn Album right when we get in the door." But he says, "popcorn" and grins and sits in his seat until we say "ok, popcorn."

He's making deals with us because we make deals with him. We taught him it's all about making deals. I'm actually glad he realized that and finds it useful. We get to know what's on his mind.

He also likes A B verbalization, which is new. I say A, he says B in response. So, one time I told him to say hi to someone named Nichole. He said "Hi Quarter." Get it? Nickle -> Quarter!

That's the exchange he'd prefer. Formulatic. Extremely minimal. In reality, we do try to push him beyond one-word requests.