Tuesday, September 1, 2009

Interpreting Bitty

Before Cuddlebug and Bearhug were diagnosed with autism, I had never heard of echolalia. Cuddlebug in particular had a habit of frequently repeating back the last thing we said, and except when it was obvious that his response didn't make sense, I just took it at face value as a response. (I learned the hard way that's not always a great idea, misinterpreting a response can lead to a meltdown!)

It wasn't until the pediatric neurologist evaluating the boys actually asked me if they answered yes/no questions that I realized they didn't. As a therapist later told me, it's easier to notice unusual behavior that is present than it is to notice "typical" behavior that is absent.

So after all these years I feel I understand echolalia a bit better, but I still struggle to interpret it sometimes. When Bitty repeats back something I just said, is he answering in the affirmative, or is he just repeating? Sometimes he'll repeat it back with a "no" in front of it and then I know he's answering in the negative.

Me: "Bitty, are you ready for a bath?"
Bitty: "No weh fo' baf!"

Me: "Whatcha doing?"
Bitty: "No wah-choo doo-in'" (translation: I'm too busy to talk to you right now, or something along those lines)

Other times it's not so obvious.

Me: "Would you like some cran?"
Bitty: "cwah"
(I pour him a cup of cranberry apple juice)
Bitty: "no cwah"
Me: "But you said you wanted cran"
Bitty: "you wah chwokka miwk?"
Me: "No... do YOU want chocolate milk?"
(a happy dance)
Bitty: "YYYESSS!"

He gets creative sometimes, repeating back questions I have asked him before, that he wants me to ask him again (like "you want chocolate milk?" or "you want your trains?" lol). I've noticed that when he's repeating, he can say all kinds of words, even sentences and entire dialogues. Like the Pledge of Allegiance. His words are clearer when he's repeating something too. His "spontaneous" speech is more often shorter (one word or a brief phrase) and harder to understand.

Sometimes there's a "delayed reaction" aspect too.

Friday, dh asked him what he did at school that day. He answered with the name of one of his teachers.

About 2-3 hours later, he was sitting with me on the couch with his drink and some trains. He pulled the cup from his mouth and said, to no one in particular, "house-keepee... bee-bags" (housekeeping, bean bags). Now, I'm pretty sure those are things they have / do at school (the "housekeeping" center at school was one of Cuddlebug's favorites at that age too), so I'm guessing that this was a delayed response to the question about what he did that day. Today he found a little bean bag in the toy box (long since forgotten) and was repeating what sounded like a game that they must have played at school with bean bags.

It's these repeated conversations that are starting to give us a greater glimpse into his days. It's almost like getting a tape-recording of a little snippet of his day, because he doesn't "narrate" it, he says it word for word as if he was back there again. His weekly class newsletter said they learned about boys vs. girls last week. I asked him, "are you a boy or a girl?" He answered, "a goowul" with a giggle. (he has a silly sense of humor). Then he started into what sounded like his teacher's instructions, "ith yo' a bowee, tushyo' fee'" (if you're a boy, touch your feet)... "ith yo' a goowul, tushyo' nose." He pretty much ignored me as he did this, not really engaging me so much as reliving what was apparently a fun activity :).

A year ago, his words were few and far between. That was about the time he finally started saying words here and there, before that time he was pretty much non-verbal. It was about a year ago that he finally said "mama" again after he stopped saying it when he regressed. Nine months ago, the only answer he gave to the question of what he did at school was the word "skoo-bus" even though he's never ridden the bus so I can only guess it was just something he associated with school.

He's come a long way in the past months and year. He's talking so much more now, and yet so much of what's going on in his mind remains a mystery. For example, I have no idea why he says, "May-bis" (Mavis, one of his trains) whenever he sees me heading to work or coming home from work. Is it an association because "Mama" and "Mavis" both start with the same letter? So does "Molly" but he never says that when he sees me? Does he think I look like Mavis? Gee, I hope not ;).

As K said recently, it's hard to really know what he knows and what he doesn't. He surprises us often, and I have no doubt that more surprises are in store :).

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K on September 1, 2009 at 9:20 AM said...

Oh my ! Picturing him re-enacting scenes has made my morning In a Slant of Sun - Beth Kephart's son talks about how he plays movies in his head
Wont it be fascinating if our kiddos play the entire sequence back in their head !!!

Izzy 'N Emmy on September 1, 2009 at 1:47 PM said...

It sounds like he's doing great! He probably does know a lot more than he lets on sometimes, but that's what makes those days full of surprises even better. :)

Sande on September 1, 2009 at 5:10 PM said...

Basically learning another language. I had that with my second boy.

How awesome that you take the time to learn his communication style though. How many wouldn't.

Anonymous said...

I'm impressed. That's a lot of language and expressive communication.

Muthering Heights on September 1, 2009 at 10:24 PM said...

It sounds like he's doing well lately! :)

Louise | UPrinting.com on September 1, 2009 at 10:58 PM said...

Interesting. Who knew such case is a speech complication already? It's as simple as a kid repeating what he heard, for cryin' out loud... who saw that one coming?
Oh boy. You guys better not be saying any bad words at home. :D
Just kidding.... (but seriously, no profanity at home!)

Patty O. on September 2, 2009 at 9:56 PM said...

It does sound like he is doing so well, but I understand your desire to know more. Danny does a lot of the same things with some echolalia, etc. He often waits a long time before answering (and often never answers questions at all) and he also answers in ways that make no sense to us. The funny thing is that when we finally figure out what he meant, it makes total sense to us.

Sometimes I just wish I could spend a day in his head and live his life to see what it is like. I don't know if I could handle it, though.

Krystal on September 3, 2009 at 4:30 PM said...

Since starting his new school, Spider Monkey has blossomed and it has only been 2 weeks...they surprise us more and more don't they?

CC on September 4, 2009 at 2:02 AM said...

What a fabulous description of his speech and language. I'll have to remember this post later in case anyone asks me about echolalia and I want to give them a written example!

Anonymous said...

Great post. 'it's easier to notice unusual behavior that is present than it is to notice "typical" behavior that is absent' - I find that quite comforting as I still tend to feel regret over the things i missed early on.

I love the way Bitty asked for chocolate milk. Hope does that as well sometimes - she asks a question that she wants me to ask her, she also replays conversations or cartoon lines at times. Just goes to show that NT kids do a lot of this stuff as well - the good thing to know is that it's development, it's progress!

Anonymous said...

Thank you for sharing all this! It's so exciting to see how they're all coming along, isn't it? Wow, you could almost have been describing Daniel, except that he and Bitty have different interests...if that makes sense.

Debbie Yost on September 8, 2009 at 11:59 PM said...

I loved this post. How exciting to hear how he is making progress. Thanks for sharing it with us.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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