Words Don't Always Say What You Think They Do
Published July 20, 2009 @ 12:30AM PT

I’ve written regularly that my son Charlie is “minimally verbal” and can’t talk too well. I realize this gives the impression that he is mostly silent and that our house is quiet. The reality cannot be farther from the truth and not just because Jim and I are something of “big talkers.” Sound, including the sound of his voice, fills our house. Not always English, not always full sentences (rarely, actually); words and not always full words.
The title of one of Dora’s posts, Just Because I’m Quiet Doesn’t Mean I Don’t Understand with a slight revision---”Just Because I’m Not Responding Doesn’t Mean I Don’t Understand”---comes often into my mind. Another variant would be “Just Because I Use a Word It Doesn’t Necessarily Mean What You’re Expecting.”
When he was younger and got very upset, Charlie often mentioned things he liked very much: burgers and fries, sushi, Gong Gong Po Po (my parents). This was very confusing and teachers, therapists, and Jim and I alike often responded by telling him that he could have X when he was calmer. But often he only got more upset even when he got the requested item. Teachers would ask if he were hungry and offer Charlie food that he inevitably did not want.
It might be suggested that we were giving him some item---”reinforcing” him, to speak a bit behaviorally---before he was really calm and really giving him what he wanted for having a tantrum. But it was only gradually that Jim and I realized, Charlie saying the words for those preferred items was often a sign that he was, indeed, very upset. He wasn’t hungry and, when sometimes given some food item, he often only seemed even more upset afterwards.
Jim and I being the language-dependent individuals people that we are, it was at first quite a mystery to figure out what was going on. Gradually we could see patterns. We know that Charlie adores my parents, but why did he he cry when he first saw them at the airport? We slowly realized that this was a sign of a deeply emotional response on his part, with Charlie in part anticipating how he would feel after my parents left again and he missed them. This whole situation was a bit difficult on my parents, but they’re ultra-accommodating (actually, they’re generally just fabulous, not to get too gushy) and made it clear, they were ok with Charlie crying when they first showed up, as they knew he loved them. Often, within an hour of their arrival, Charlie would be all smiles.
Of course we try to teach Charlie as many words as we can. Speech therapists have gone back and forth about him having “problems with word retrieval.” I’ve come to suspect that he often does: He may well know all the words directed to him, and have many more in his head to say, but connecting what he wants to say with the motor activities involved in saying the word can be a lot to process. I suspect that, at such times, Charlie does what I’ve done when speaking (trying to, that is) in a foreign language: He uses the word that’s the closest equivalent he can think of, or that he’s most used to saying, or that first comes to mind.
These are some of the reasons that I’m not always sure what Charlie means when he says “no.” Sometimes he really means “no” as in “no.” But other times (based on what Charlie’s done afterwards), “no” is more of a “no not yet” or “no I’m still thinking about it” or “maybe.” Or something else entirely. Often we try to suggest other things that Charlie could say, but when Charlie is stressed and not sure what to do or what he wants, having him talk more is placing yet one more demand on him.
We want to take Charlie at his word and not assume that he has no idea what he’s saying. What I’ve tried to suggest here is that there’s a bit more of gray area to understanding Charlie’s speech. After all, many words for many of us mean much more than they might commonly denote, and certain words may have special associations that are part of highly personal, deeply meaningful memories that get lost in the translation.
Image from hemmy.net.
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I am amazed at the similarities between Charlie and my son Anan. We have been pondering about similar situations right now. My son is also verbally limited and uses lot of words which at times seems out of place or with no particular relevance. I often think it is used for a particular purpose. Yesterday we were visiting mountains here in North Carolina and as I showed him some mountain peaks while driving, he sang a song which had words "sky high". Music is his "thing" just like Charlie and they share the same birthday as well.
The problem that we encounter often is similar to what you talked about. He often ask for either water or coke or icecream but not actually interested in them. I have observed he used those words when he is anxious, I am not sure if this is based on past experience when in school they used icecream as a reinforcer. Your blog about this topic is so timely and confirms my gut feeling that we need to most probably help him to recover from his anxiety instead of getting bogged down on actual words that he is using.
The recent achievement that he has is to spend a week in a sleep away camp in mountains organized by Autism Society of North Carolinas and it seems that he liked it .
Kristina, if you do not mind I would like to meet you next time I am in New Jersey, mainly because I am an avid reader of your blog and it has helped me a lot and also because of the striking similarities between anan (13 years old) and charlie.
Thanks
Animita
Posted by animita saha on 07/20/2009 @ 09:29AM PT
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Hi Animita, it would be fabulous to meet you! Let me know----thank you for writing about Anan. I am often unsure about the sort of observations I note here and hearing from other parents and individuals on the spectrum helps me to think I'm on the right (or wrong) path.
Hope sleepaway camp goes well, that is wonderful!
Posted by Kristina Chew on 07/21/2009 @ 07:54PM PT
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I wonder if some of these language issues are universal to autism, or at least a sub-type of autism. It all seems very familiar to me. My son is quite echolalic so we too have a household filled with a lot of talking. On the other hand, his self generated or composed language (i.e. non-echoed language) is very limited. His echolalia can be single words, phrases or entire scenes from a movie or computer game.
I think there's a feeling among SLP's that echolalia is a form of stimming, and at times it is. Sometimes it's an interactive type of stimming where there are proper responses that I am expected to make. Sometimes though, these words or phrases or songs from the past are used as symbols for something that he's trying to communicate. Let me give an example. For a long time "no slide" was his phrase to express frustration at not being allowed to do something that he wanted to do. This came from a party next door to a house with a jungle gym that he wanted to play on and couldn't. With a little understanding this is real communication. It's hard to make a catalog of these phrases and they're not understood by many people. It's a difficult language to understand because you have to look at the situation and because it's constantly evolving over time.
When you separate yourself from the frustration of how difficult it is to understand what he's trying to get across you have to acknowledge it is a language. And with all the symbolism and metaphors it's pretty poetic.
Posted by Cornelia Rivers on 07/20/2009 @ 09:54AM PT
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Word retrieval issues are probably found along the whole spectrum, and all the way through the borderline into NT. I am in the very mild Asperger's end of the spectrum and often have word retrieval issues not unlike your son or Charlie; I just have a larger starting vocabulary and grammar to work with so my language doesn't seem impaired. Like your son and Charlie, I lose words when I'm very frustrated or anxious, and also when I'm most relaxed (if I'm with my friends, I know they'll love me even if I can't remember how to say a word I've only ever read in print or retrieve the word I want and have to substitute and play guessing games to get to the heart of my point).
I find your comment about echolalia as a form of stimming very interesting. That relates back to a discussion of music and cover versions of songs on Autism Vox at least a year ago, where a number of us noted that we/their children need songs/music to be the same every time.
Posted by Ali ... on 07/20/2009 @ 09:06PM PT
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I've got to find that post, thanks for mentioning it Patience!
Cornelia, I really like some of the things you note, how echolalia can be an "interactive type of stimming." Listening to Charlie, I've become much more aware of how I (and others) say things not with any "meaning" but just to "say something" or to express a feeling....... I used to send lists of Charlie's phrases into his teachers but that idea didn't go too far as I realized they often had no idea what he was saying, or did not catch the phrases in a busy classroom.
Posted by Kristina Chew on 07/21/2009 @ 08:04PM PT
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Your post "Words Don't Always Say What You Think They Do" could have easily been written about my 7 year-old son Thomas. Our home is full of words and phrases, and sometimes the words are just words. Sometimes the words have very precise meaning (or at least a precisely-understood meaning). When Thomas is upset, he uses what we call "distress words", and usually his behavior becomes his way of communicating. We do believe that Thomas does seem to understand much of what is said to him, especially if we talk "slow and low".
Posted by Shay West on 07/20/2009 @ 12:34PM PT
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It pains me when I read that some parents think that in a different time, their autistic child would have been diagnosed mentally retarded. I agree these children, by and large, fall on the "tail" of the intelligence bell-curve distribution. But, if you think they are MR, you are considering the wrong tail!
My son has lost typical autistic symptoms, but some social challenges remain. However, it has not escaped my attention that some of the social challenges are caused by the fact that my son is highly gifted and thus has interests and observations far beyond his years.
Not even any biomedical doctor has ever suggested we use carnosine - but I wanted to try it nonetheless and I have to say we saw huge improvements in receptive and expressive language while using carnosine. www.carnaware.com is a website where you can find double-blind placebo controlled studies for carnosine.
Posted by Cheryl White on 07/20/2009 @ 01:20PM PT
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Am I missing something? Is this comment related at all to the post or any of the subsequent comments? I don't think any of us were implying our children were MR and I resent the implication that talking about a-typical speech means that we're saying our kids are MR.
Or am I misinterpreting what you're saying?
Posted by Cornelia Rivers on 07/20/2009 @ 02:27PM PT
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Sorry I wasn't clear, Cornelia. I didn't intend to imply that a-typical speech indicates a kid is MR or that anyone was saying so in this particular post.
In other posts, referencing the exploding numbers of diagnosed autistics, it has been opined that in another time an MR diagnosis would have been given instead of the autism dx received. I disagree. I think MR and autism are distinctly different, and further that their diagnosis rates are not inversely proportional, i.e., the increase in autism diagnoses is not attributable in any fashion to any real or perceived reduction in MR diagnoses.
Posted by Cheryl White on 07/20/2009 @ 05:36PM PT
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whoops, make that www.carn-aware.com
Posted by Cheryl White on 07/20/2009 @ 01:21PM PT
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