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Sunday, January 20, 2013

What Does Janey Actually Say?

It's very, very hard to explain Janey's talking to anyone who hasn't heard her, and even people who have heard her, but only occasionally or in certain settings, don't really get a complete view of how she talks.  I tried today to write down everything she said.  I missed a lot, but I captured a bit.  Her speech is divided into I'd say 4 categories.  One is actually talking, to ask for something or give or get information (mostly the asking).  One is direct echolalia, something repeated right after she hears it, usually exactly, but sometimes a little altered.  One is delayed echolalia, a phrase or saying from a video or something she's heard someone say a lot.  And the fourth isn't really talking, but spontaneous singing.  The fourth could be considered part of the delayed echolalia, but it seems different to me.  Here's some examples---

First, the actual talking

I want you to get me soda
I want tuna
I want mayonnaise
I want pizza.

That's it, for a whole day.  I'm sure there must have been a little more, but not much.  You can see it's all food requests.  There weren't reversed pronouns today, and it was mostly full sentences, but not exactly a huge amount of conversation.

Next, the direct echolalia

Do you remember that now?
Oh, Janey, chimpanzee!
Go Patriots!  (the Patriots play a big game today!)
But you don't open the oven.  That's too naughty.

Mostly just repeated, but the oven one had the "that's too naughty" added on by her.

Now, the big one---delayed echolalia

A storybook?  And you call that a present?  (from Beauty and the Beast Enchanted Christmas)
Well, I'm not going anywhere.  I'm exhausted.  It's best that I say here, in case they come back (Kipper)
Who is eating my cake?  It's Arnold!  (Kipper again)
Don't hit!  Don't hit her!  That's very naughty! (I'm not sure when I said that, but I am pretty sure I did)
Do I look weird?  Not weird at all.  But you look kind of different, in a cool way (Yo Gabba Gabba)
Do you happen to know whose bowl you're eating?  MINE!  (from a sing-a-long video, spoken part)

So mostly videos, with the no hitting thrown in.  That could be a video too, I'm thinking, but I don't recognize it.

Then the singing

"Stand by Me"
"Waltzing Matilda"
"There's a Hole in the Bucket"
"You're a Grand Old Flag"
"Eensy Weensy Spider"

The singing is usually the whole first verse of a song, sometimes more, right in tune and nice and loud.

So....some days Janey talks a lot, but she never says a lot that's actually communication.  Once in a while, the delayed echolalia could be cut and paste type talking, saying something she wants to say.  That might have been the case with the "I'm exhausted" today, or the hitting being naughty, but usually, it seems more like random playbacks of phrases stored in her head.

There's a lot that Janey's speech almost never has.  She almost never answers questions, at least without a ton of prompting, and then they are only fact type questions like "What's your name?" or "What shape is that?"  She almost never just talks about things, like commenting on the cats, or snow, or what she is doing.  She never has conversational volleys, where we talk back and forth.  If you took away the singing and different types of echolalia, her talking would basically be her asking for food, videos and once in a while, things like a bath or crayons.

I've read lots of times that it's promising when autistic kids have echolalia, that it's a good sign that they will speech more in the future.  But Janey is eight, and I don't think she's improving.  If I read back on old blog entries here, I think it could be argued she's talking real language less overall.  It's frustrating.  I wish there were more literature out there about echolalia.  Why do some kids with autism have it and some not?  Does it have a meaning?  How should I respond to it?  I'd love a book about echolalia, or at least a lengthy article!  More than anything, I'd like a book specifically about Janey.  I've said that before.  The handbook to her, her speaking and rest of her, doesn't exist.  Or else I'm writing it, and I don't feel up to it, some days.


1 out of 64 said...

I'm sure you've read everything there is to find on this. I found this link interesting:

Willow makes noises but no words (although she says something that sounds a lot like Daddy) but not always with a purpose that we can see.

Someone was talking to me the other day about her daughter who is a month younger than Willow and she was saying that she read somewhere that children (in her case typically developing) start to talk about their day to themselves before they go to bed each night. They run verbally through the events of their day, then they go to sleep and it's speculated that they dream about it. My friend said her daughter always talked before bed, but they never knew what she was talking about until she read this. Now putting two and two together she realized her daughter was talking (and more importantly thinking) about her day. She'd say "Pluto" when they had seen Pluto that day and so on and so forth.

Besides making me considerably envious (I'm an honest person, what can I say) I actually couldn't help but wonder if Willow does that too. Most nights after we put her in her bedroom she goes on and on "talking" (we call this talking but it's not words we understand, mostly a bunch of noises & shrieks ect) for a while and then finally goes to sleep. You can tell she's getting very excited at some points. I wonder if she's talking about her day. Does Janey talk a lot before bed?

audball said...

We had lots of echolalia with our DD (who is now 10). Pretty much as soon as she learned to form phrases and sentences, they were in that format. I remember one of the first articles we were given by a speech pathologist - it was more on verbal dyspraxia, but DD's issue wasn't based on motor development. There was relatively little work done examining echolalia 6-7 years ago.

We were told to keep trying to engage her. Forget about the format (echolalia), just consider the context and try to get more words out. We used to have terribly difficult sessions with the SLP, whereby she would put a desired toy just out of reach and wait for DD to ask for it. My girl would just yell and the sessions often ended with both of us in tears. The only thing that kept me going was that the next week (actually, the next day!), my daughter would ask for the item correctly, with little prompting. Then it became even easier the following week. It was almost as if she would have to push through the frustration to access the ability.

I loved our SLP, but I can't say I would automatically recommend the approach. I wasn't working and could focus my hours with just my DD at home, engaging in what seemed to be one-way conversations (me to her, obviously).

I go back and forth as to whether or not my girl was just not ready at the time, or if the therapy was really what prompted her to make progress. It's never easy to know for sure. But I did notice that as her ability to converse (without the echolalia) improved, her outbursts began to diminish - well, at least until she started dealing with the emotional component of communication, which became another hurdle.

I found some papers that may be a good start: The "gestalt" discussion about echolalia is particularly fascinating.

I think she is making progress; it's just as a parent, it's hard to see. And we saw a lot of two steps forward, one step back with our daughter. It was *years* before I could have a regular two way conversation with my girl (and we worked intensely with a SLP for two years, beginning at age 3.5 years). One day I just realized, Hey, I'm not skipping from topic to topic with her; I'm not using "third person" language with her; she is answering me back!

I'm not saying that it will be the same case for Janey, but it will happen in it's own time, especially if you are seeing that the echolalia is pertinent to the conversation. The link with appropriate *language* is huge in my book :).

Suzanne said...

Thanks so much for your ideas and input! I've bookmarked those article and the Be a Good Dad blog and I can't wait to read them when things are quieter!

That's an interesting idea about the nighttime review of the day. I know I do that mentally. Janey doesn't talk much at all before sleeping. That's one of her quietest times. Usually, she says "Snuggle on Mama's bed", which means she wants me to lie down with her, and then she's out---about a minute later. Thank goodness, usually. I love how you said it made you envious---I can't tell you how many times I've felt that way hearing stories about other kids.

It's so interesting to hear about your daughter's speech therapy, audball! I can picture how hard that would be to watch, with the toy out of reach, but it sounds like it worked, or something worked! It's wonderful that you have two way discussions now. That is something I dream about. The few times Janey has directly answered me, I've had a moment like you said--"Wow! She is answering!" I do think often Janey's echolalia is linked in some way to the current conversation. It's almost a game (although not always a fun game) figuring out how.

Thanks as always for the ideas and information!

Sophie's Trains said...

I'm very curious, are you able to get a back and forth going with her? Like if she says "I want a soda" and you said " you want sprite or mountain dew?" "in a glass or in a can" etc. will she answer? They say to give the less preferred choice first so she isn't just echoing the last word she hears.
The delayed echolalia. Is she using it in some context? Like remotely connected to what's going on? Like if she said " who ate my cake? And perhaps she wants something sweet? So if you said " no cake right now but we have.....".
I'm just wondering how she would react. Obviously she has the expressive language, so she must have the receptive language too?

Suzanne said...

The back and forth almost never happens. With that example, if Janey asked for soda and I said "Do you want Sprite or Coke?", 99 times out of 100 she'd say "DO YOU WANT SPRITE OR COKE!" back in an irritated voice. It's like she can throw out the initial phrase or request, but she doesn't think we should get more than one. The 1 out of 100, she'd actually answer, but often that is the saying the last thing she hear echoing. We have some scripted conversations. She'll ask Tony for toothbrush (she loves brushing her teeth, and we have to get the flouride free kind as she would get many times the recommended dose otherwise), he'll say "How many toothbrushings?" and she'll say "three, and one for good luck" The numbers or the tone never change.

The delayed echolalia is once in a while maybe in context. Usually note, but something she assigns a phrase to a situation or feeling. For example, she used to say "Everything's broken!" when she was upset, which was a phrase from a Care Bears video, or she'll say " I can't play with you right now; I'm cleaning up YOUR MESS", from a Kipper video, when she's made a mess. I do think her expressive language is quite a bit ahead of her receptive. It's hard to say for sure, as sometimes she shows she understands things we'd have no idea she would, but she uses far more words than she actually understands, including complicated long words that she says perfectly, but I am quite sure she doesn't understand!

Suzanne said...

I forgot to say---sometimes I do try the "answering what she's really asking" approach, if she says something like the "who ate my cake?" I don't really think it works well, but it's one of the few suggestions I've heard from speech professionals about reacting to delayed echolalia---act as if it's regular speech, and answer what you guess it means. It keeps me sane, anyway, although when she says the same thing 20 times in a row, it can get to be a challenge to think of something to say back!

audball said...

Suzanne, she really sounds like my girl when she was exploring language - almost exactly! So here's something you can try with the soda..but again, you have to be prepared for potential frustration/outbursts:

The next time Janey asks, "Do you want Sprite or Coke?", show both cans to her. If she gets ready to reach for one (let's say the Coke), put the other away and work with the can she wants. She may get upset, but hold the Coke close but out of reach and say, "I want a Coke!" If that's too much, just have her say, "Coke, please!" If she does, she can have it. Try to keep it light (if possible), and have her focus on your mouth and facial expressions.

Does she like ice? (My kids love ice!) Maybe you can point to a glass with ice in it and say, "Ice?" If she makes a grab for the ice, make her say "Ice, please" before you let you have some.

Maybe just practice this exercise with just soda? That's what our therapy was like :S Lots of repetition, sometimes with the same question/wording for weeks!